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Please see note from Webmaster on the home page.



Hi my name is Dawna, and my grandmother has health problems. We are trying to figure out what she has. She got a test done for Edema. We would like to know what are the symptoms to this disease. If you have any information please send me an email, I would greatly appreciate it. Thanks for all your time, Dawna
Dawna Sturgill <Flychick_12004>
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Hello, i am 16 and in grade 10. I am doing a school project of this interesting disease, and none of the sites of which i looked at have the symptoms. Is their any? What are they? Please contact me if you know.
Courtney <cuteasabutton_69@hotmail.com>
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Hi all. I have had WD for 21 years. I just heard about this web site All though we make think we are alone at times we are not. So glad every one is out to support all. I have been On Meds They are working for me. Somtimes I feel so good that I forget to take them. By reading all your letters I realize how imporatnt it Is to remember. Also I have been on a strick diet I was told Liver wish did not bother me any how :) There was more stuff that I had to give up . Like Chocolate, Peanut butter You know everybodys favorite. Just by doing researh today I foun out the only thing I had to stay away from was liver and limit the shell fish. Well would love to hear from anybody that may have questions ? i have been there and still am. I have to go to DRs This week after I cnfirm with him about the chocolate Im going out for a nice hot fudge sun. Take care
Caren <cruble@americu.net>
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Can Employers (legaly) use a diagnoses of wilson's disease as a reason for not hiring someone?
William Sandie <sandiewd@msn.com>
Fernley, Nevada usa -
Can anyone help us find a doctor in the NJ NY or Phila area. Thanks
joyce <joycetirro@aol.com>
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Does anyone out there know more information about the fluid in the lining of the abdomen associated with WD? My lower abdomen has been swollen in a strange way the past couple days & I'm a bit concerned. Has anyone tried any Milk Thistle or other liver cleansing herbs? I wonder how that works with meds, as I would think the detoxifying herbs may cleanse you of all medication. Also, can you take two different kinds of meds at once? (ie-Syprine & say...Galzin?) Or has anyone had problems switching meds? Any vegetarian WD patients out there? I would love to hear from anyone with WD or family, I have been diagnosed for 15 years now and have never talked with anyone who has it. It would be nice to compare notes on diet & health topics.
Holly C <Trident95@yahoo.com>
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I am a 47 yr. old man who has been progressively getting sicker over the past two years. The doctors have established that I have cirrohsis, but can't pin point the cause. I'm at my wits end. I'm pyscially weak and exhausted, enlarged spleen, stomach upset, pains and edema in my legs with light brown spots all over my shins. I need to get establish what is going on inside my body because the doctors can't seem to help. Can you suggest any doctors in Canada that are versed in diagnosing Wilson's Disease. Your help is greatly appreciated. *This is being sent by my sister, Sandra.
Bill McComb <mccomb2@telusplanet.net>
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HI
HIDIE <HIDIE@YAHOO.COM>
SEATAC, WA USA -
Hi, Im 27 and just found out i have WD after a long drawn out process. I have given more blood that i knew i had in me. I am intrested in talking to other people with this or thier family members having it. Would like to know where to go from here....thanks Joe
Joe <captinjoe@aol.com>
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Thank you everyone for you stories. They are very inspirational. I was diagnosed in 1987 with Wilson's, and started taking Syprine 250mg 4x/day. It's been fourteen years and I'm still hanging in there. I consider myself to be quite fortunate, although I have a tendency to take what good health I do have for granted. At times, I have mild muscle tremors, slurred speech, and feelings of worthlessness. I fight every step of the way with exercise and proper diet. It's very nice to hear that many people are living long happy lives despite WD, it gives me hope. For all of you who have lost loved ones, my heart goes out to you.
Holly <Trident95@aol.com>
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Just heard about WD and decided to check it out
Monty <monty_tt1@yahoo.com>
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hi everyone, I have hep c and stumbled upon a site that gave me some info on the thymus gland. It helps the body fight desease's that effect the liver.Jusst type in carson b burgstiner I hope this helps, I feel for all of you and hope this year brings new hope.
linda <lindamindrum@hotmail.com>
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Hi everyone, I am new to this website but I am pleased to have found it. I am originally from Germany, but live in the UK now. I have been diagnosed with WD in 1981 and then in 1999 with chronic Hepatitis C and I am still here. Aparently I have a rest function of the gene, because I was untreated for years and nothing happend. Well, my copperlevel in my liver doubled, but still no symptoms. Now they suspect my son (9) to have WD. Anybody out there with children with WD? I would like to here from anybody who can connect to the above. See you soon Anja
Anja <Obibrown@freeserve.co.uk>
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hi, my previous neighbourgh is very right. "collige virgo rosas" carpe diem 16 th century. god bless you all. regards.
xxx <topitos_2000@yahoo.es>
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Very imformative.
Kristy <Kreloj@hotmail.com>
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Everyone is drawn to this website because of a common connection, we are all survivors. Survivors in the sense that we have been sent through turbulent times in our lives and have come out in one piece. Those diagnosed and living with WD are all survivors. The family, friends, and doctors who share in our times of pain, who sit by our bedsides and pray for us, they are all survivors. I am 18 and I am a survivor of the most severe stages of WD. When I had first began to show symptoms, the disease was already at it's worst and it all happened overnight. My liver had ruptured from the excess copper that had built up over the years. It was beginning to spread to other major organs and was shutting them down one by one until the inevitable. A normal person's copper levels are about 17, mine were 17,000! A liver transplant was the only procedure that would say my life. Even though my Uncle David was the perfect donor, there was a time when I had only 18 hours to live. That sort of realization hits you dead center and you are never the same afterwards. The past year has been my year of recovery and self-discovery. It has only hit me recently to follow up on the disease which has defined me so much. From this site alone, it sends a shock through me that there are so many others with the same misfortune. Not a day goes by that I am not grateful to be alive, to simply be able to breathe. Life holds so much more precious meaning to me than ever before. I admitt that I have lost many things through my journey with WD, but I have gained so much more. My daily motto is Carpe Diem. It's Latin for "sieze the day." I wish everyone the best of luck in all the endeavors you pursue. I also would like to open my arms and my email mailbox to anyone who might want to share their story with me. Keep hope alive!
ALI <leo_2001@juno.com>
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running no feaver, red spot rash all over .....on legs,etc....plus a diabetic....
Butler <deedee31@bellsouth.net>
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Hi, Group haven't been able to sign up for the List-server.e-mail problems. Have missed speaking to all of you. My daughter some may remember was addicted to Crack. She's 33 diagnosed in 1988. I am desperate for some info. She had the veins in her neck rupture, she almost died. We live in Riverside, CA. Need a Physician with knowledge of Wilson's D in Los Angles or near vacinity. I contacted Dr. Vierhling, Loma Linda no knowledge, Dignosed Tb.until Dr. Vierhling got things under control. Put bands on viens. Says she has to go on Liver Transplant Lisa. Dr. Put on 250Mg Trientin 4 times daily. She has not taken Zinc in two years except 6 months then stopped again. Have a feeling this caused the veins to rupture. Need to no what to expect? Look for if something isn't right? what has to be done before ready for transplant list? Any info greatly appreciated. Afraid to put on such high dosage with no Dr. to monitor after her not taking any Zinc for 5 months know. Please help. JHbb@Earthlink.net
Jane Bell <jhbb@Earthlink.net>
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I have to add to my previous note here,as I may have come off as a pscho myself! I believe everyone of you who has this disease ,knows that,it is hard to get on in society! My Brother-In-Law is a great guy & is wrongly in jail! I was hoping I could get some folks to write to the State of Wisconsin or the Institute he is in. He's guilty of the afore mentioned ,but hardly a bad man! Thanks!
Vicki <vickipomeroy@hotmail.com>
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Boy!,who was that pscho they allowed to sign?! what a creep! Anyway, my hat's off to all of you! My Brother-In-Law could sure use some help right now! He's in jail for smoking pot (in his own home)But,because he lives so close to a school & he was arrested as a teenager before,he's in for 2yrs.I don't condone going against the law,but he said it helped him with all of his symptoms.We all wrote the judge & they were very sympathetic & he did drop alot of his sentence.But, if any of you are familiar with our jail system,it is very bad! He has a hard time with the guards as they are unfamiliar with Wilson's & take his actions wrongly! I don't know how I can help him,do any of you?Thanks! Sincerely, Vicki
Vicki <vickipomeroy@hotmail.com>
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Boy!,who was that pscho they allowed to sign?! what a creep! Anyway, my hat's off to all of you! My Brother-In-Law could sure use some help right now! He's in jail for smoking pot (in his own home)But,because it he lives so close to a school & he was arrested as a teenager before,he's in for 2yrs.I don't condone going against the law,but he said it helped him with all of his symptoms.We all wrote the judge & they were very sympathetic & he did drop alot of his sentence.But, if any of you are familiar with our jail system,it is very bad! He has a hard time with the guards as they are unfamiliar with Wilson's & take his actions wrongly! I don't know how I can help him,do any of you?Thanks! Sincerely, Vicki
Vicki <vickipomeroy@hotmail.com>
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Please help, my fiancee, Tina has an advanced case of Wilson's Disease and I need more information on how to get her treated in the Philadelphia area. Any good suggestions would be appreciated.
L. David Urvina <lurvina@du.edu>
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Please help, my fiancee, Tina has an advanced case of wilson's Disease and I need more information on how to get her treated in the Philadelphia area. Any good suggestions would be appreciated.
L. David Urvina <lurvina@du.edu>
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Olá, meu nome é Verônica, sou brasileira, tenho 22 anos e sou portadora da Doença de Wilson. Fui diagnosticada em março de 1997, sofri muito, mas me tratei e hoje estou boa. Se quiser conversar ou tirar dúvidas sobre a doença, liga pra mim ou escreve: (11) 3884-3467; e-mail: veronicamb@uol.com.br. Abraços!!
Verônica de Mello Barros <veronicamb@uol.com.br>
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Does anyone out there with Wilson's Disease have really graphic nightmares? Read an case history of a man with WD a long time ago and I think it mentioned he has sever nightmares. Coincidence that I have them too or is it part of W.D??
sue <chicagosue62@yahoo.com>
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Does anyone out there with Wilson's Disease have really graphic nightmares? Read an case history of a man with WD a long time ago and I think it mentioned he has sever nightmares. Coincidence that I have them too or is it part of W.D??
sue <chicagosue62@yahoo.com>
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WOW U MUST FEELLLLLL SPECIAL HEHEHEHEHHEEEEEEEE
MISTY <UMMMMMMMMMMMMMM NO>
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U R PATHETIC **** u All
MISTY <UMMMMMMMMMMMMMM NO>
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Hi, my name is Lenka and I was diagnosed with WD in January 2000 which makes a year since I've been on 1500mg penicilammine a day. I am 22 and I had had no symptoms. I felt perfectly fine but looking back I realise that I occasionally felt suicidal and was constantly looking for the purpuse in my life. However, I was only 18 away from home and thought that it was quite natural then. It was only out of curiousity that I went to see my Gp in the Uk to check on my livers. He found a high level of copper concentration in my body and sent mee to the specialist. It took another a year and half before discovering that I was suffering from WD. I consider myself lucky because had I not gone to the Uk to study and had believed the doctors in the Czech Republic who came up with idea that I suffered from " an untreatable illness of people in love" - I guess now I'd have been struggling to survive. I feel most tired around 3 p.m., I work with computer a lot and I thought that this accounted for my bad eyesight, sometimes when checking in people I speak so fast that I miss out some words and have to repeat myself all over again, it is embarassing and I thought that It could be simply because of the number of people I've checked in, now however I doubt it and think of the influence WD has on my nervous system... I'm quite ambitous and this would be devastating for me should it become more obvious. Up till now I haven't paid so much attention to my illness it was always my boyfriend who would remind me of the pills every single morning and night. When we fell out I would not take them just for the sake of upsetting him. I was behaving more like a child than an adult and thanks to all of your stories I've come to realise that it's my life I'm playing with. Thank you very much, thanks to my parents and above all thanks to my boyfriend Sait - I've had no idea that it can lead to such a fatal stage or rather I wouldn't adtmit to myself that there is a pretty good chance of me ending up a halfway house not taking the prescribed medication. Good luck to all of us - I would greatly appreciate if you suffering ..could send me your lifestory and also diet with list of meals which you don't even dare to look at. For some reason I could not get any suggested diets printed out. Thank you
Lenka <lenka001@talk21.com>
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I was diagnosed with Wilsons disease about a year and a half ago. They put me on the proper medication and now all of my enzymes are back to normal.
Mindy Becker <mindellynn_420@hotmail.com>
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I have WD I was told three weeks befor my 13th birthday. I have alot of trouble functioning in society because of this.I am now 23 and have to go in next week for my check up befor my bi-op. Which I have to get on march break. I would like to hear from other people who also wake up each morning and thank a higher power that they get to see another day and hope that its the day they find a cure.
Jess <greyshollow@yahoo.ca>
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:)
Anita <ssjanime360@aol.com>
TX U.S. -
Hello to all other patients.I am feeling for every one of you.My husband and I have 4 great children ages 19 17 16 and 11.The 3 oldest are all boys and have been diagonosed with Wilson's Disease in 1993.It all started in 1990 though when our oldest was 10,sick with headaches and fevers.With this they discovered his kidney was swollen and blood coming through his urine.The docs in Regina,SK.Canada sent us home telling us he had mild kidney infection.Over 2 1/2 years of doctoring and things getting worse like Swollen splien,platlet count down to 45 and starting to loose his immunities. After this we went to Winnipeg Manitoba where he was diagonesed with this disease and tested the other children,only to find out all 3 boys have it and the little girl is a carrier.It takes two carriers to meet then the children only have 50/50 chance of getting WD.Ther was a doc who studies the genetics in Montreal who did our studies who know lives in Edmonton AB. We were told that she found the missing gene which might take up to 5 years to get. We are keeping our fingers crossed.All 3 boys are taking 100mg penicillimine. the 2 youngest are pretty good cause it was caught early enough tokeep under control. Our oldest who is coming 20 now still has low platlets of 45 but his immunities have been good.He has not been sick for the past 2 years except for a cold or two. He just finished another CT scan to go ever his splein again and the docs are wondering what to do with it. Every day I wonder if my children will live long normal lives,have children,etc.etc.Anyone who wants to talk can Email us Thank you all for giving us your stories to read. Mom of 3 WD children
Mrs.Debbie Beebhing <debbiebeeching@hotmail.com>
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HI MY BEST GUY FRIENDS DAD JUST HAD A SEISURET RECIEVED THE NEWS TODAY WHEN I GOT OUT OF SCHOOL EARLY AT 1:30PM I FELT SO BAD FOR HIM CAN ANYONE PLEASE IM ME AND TELL ME HOW I CAN SOMEWAY MAKE MY FRIEND FEEL BETTER =-( RYAN I LOVE YOU
JESS <Bubleicious25>
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Hola
Don Hoe <Bubba_tubba6969696969@hotmail.com>
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same chances of having this awfull disease than of winning the spanish gordo lottery. it is a pity, regards and strenght to everybody. you deserve it.
vicente <topitos_2000>
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Hi, I am a final year student at Huddersfield universtiy in the UK. I am producing a website for my final year project on wilson disease. I wanted to try and include the difficulties that people have experienced not only with diagnosis but also treatment, etc. I would be greatful if anyone could email me with difficulties they have encountered so that it may be able to help somebody else who is trying to get diagnosis or is experiencing the same kind of difficulties. Thank you Cheryl Blakemore
Cheryl Blakemore <s9803551@hud.ac.uk>
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HI EVERYONE. THIS IS A WONDERFUL WEBSITE. I NEVER KNEW THAT THERE WERE SO MANY PEOPLE OUT THERE WHO HAD THE SAME DISEASE AS ME. I WAS DIAGNOSED WITH WD ONE WEEK BEFORE MY THIRD B-DAY. I JUST TURNED 19 YEARS OLD ON JANUARY 24TH. MY OLDEST SISTER NINA WAS THE FIRST TO BE DIAGNOSED WITH WD. WHEN SHE WAS 16, SHE BECAME ILL.THE DOCTORS DIDN'T KNOW WHAT WAS WRONG WITH HER. THEY DID SOME TESTS AND FOUND OUT THAT SHE HAD WD. THE DOCTORS OR THE HOSPITALS NEVER HEARD OF IT. IT WAS TOO LATE TO TREAT HER WITH MEDICINE SO SHE HAD TO GO THROUGH 2 LIVER TRANSPLANTS. DURING HER SECOND LIVER TRANS. SHE DIED 11 DAYS BEFORE MY 3RD B-DAY. I NEVER REALLY KNEW HER SINCE I WAS SO YOUNG, BUT I FELT THAT I'VE KNOWN HER MY ENTIRE LIFE. I NOW HAVE TO TAKE MEDICATION EVERYDAY. I TAKE CUPRIMINE (WHICH IS ANOTHER NAME FOR PENICILLIMINE. I ALSO TAKE PYRODOXINE, ZINC, AND SOME OTHER MEDICINE. I HATE TAKING MY MEDICATION. ESPECIALLY THE CUP. BECAUSE IT MAKES ME FEEL SICK TO MY STOMACH EVERY TIME I TAKE IT. BUT IF I WANT TO LIVE THAN I MUST TAKE IT NO MATTER WHAT. IF THERE IS ANYONE OUT THERE WHO WOULD LIKE TO CHAT OR HAVE ANY QUESTIONS ABOUT WD, EMAIL ME AT CHANDLERE@NKU.EDU
ERIN CHANDLER <CHANDLERE@NKU.EDU>
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HI EVERYONE. THIS IS A WONDERFUL WEBSITE. I NEVER KNEW THAT THERE WERE SO MANY PEOPLE OUT THERE WHO HAD THE SAME DISEASE AS ME. I WAS DIAGNOSED WITH WD ONE WEEK BEFORE MY THIRD B-DAY. I JUST TURNED 19 YEARS OLD ON JANUARY 24TH. MY OLDEST SISTER NINA WAS THE FIRST TO BE DIAGNOSED WITH WD. WHEN SHE WAS 16, SHE BECAME ILL.THE DOCTORS DIDN'T KNOW WHAT WAS WRONG WITH HER. THEY DID SOME TESTS AND FOUND OUT THAT SHE HAD WD. THE DOCTORS OR THE HOSPITALS NEVER HEARD OF IT. IT WAS TOO LATE TO TREAT HER WITH MEDICINE SO SHE HAD TO GO THROUGH 2 LIVER TRANSPLANTS. DURING HER SECOND LIVER TRANS. SHE DIED 11 DAYS BEFORE MY 3RD B-DAY. I NEVER REALLY KNEW HER SINCE I WAS SO YOUNG, BUT I FELT THAT I'VE KNOWN HER MY ENTIRE LIFE. I NOW HAVE TO TAKE MEDICATION EVERYDAY. I TAKE CUPRIMINE (WHICH IS ANOTHER NAME FOR PENICILLIMINE. I ALSO TAKE PYRODOXINE, ZINC, AND SOME OTHER MEDICINE. I HATE TAKING MY MEDICATION. ESPECIALLY THE CUP. BECAUSE IT MAKES ME FEEL SICK TO MY STOMACH EVERY TIME I TAKE IT. BUT IF I WANT TO LIVE THAN I MUST TAKE IT NO MATTER WHAT. IF THERE IS ANYONE OUT THERE WHO WOULD LIKE TO CHAT OR HAVE ANY QUESTIONS ABOUT WD, EMAIL ME AT CHANDLERE@NKU.EDU
ERI CHANDLER <CHANDLERE@NKU.EDU>
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your website sux nuts
WicXkeds <??????>
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I was diagnosed in my sophomore year of Highschool in 1996-97. The first symptoms I had where bad vomiting until I fell asleep in the hospital. The next morning I felt very good compared to the previous night. I spent one week in a local hospital until an arrogant hematologist sent me home because he "couldn't feel my enlarged spleen". After a weekend of phone battling by my Mom to get a referral for insurance reasons we were off to Johns Hopkins. Luckily the fine institution, and I don't have any reservations about saying that, took only a week to find a diagnosis of Wilsons disease. In addition to my main GI doctor all of her interns could tell that my spleen was enlarged. Luckily my Mom works for the government and my medical bills are paid by her insurance, for now. My sophomore was not interupted to the extent that I had to take it over again and my life continued. Besides numerous neurological awakenings and a change in diet I have had few other dramatic changes in my life. I hope that my tale gives hope to the other Wilsons young people that you can deal with this condition with out a great battle. I also hope to thank the mothers of the world such as my own that don't take bulls*** from doctors in regards to their kids. Keep fighting the good fight for their sake and for the sake of the future.
Matt Watson <bm2@gateway.net>
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DOES ANYONE KNOW OF A DISORDER IN BABIES CALLED SHUDDERS. A FRIEND OF MINE HAS A 15 MONTH OLD WHO IS SHAKING HIS HEAD AT LEAST 100 TIMES A DAY AND HER PED. TOLD HER IT WAS CALLED SHUDDERING. CAN'T FIND INFO ON IT ANYWHERE FOR HER. SHE IS VERY WORRIED AND WANTS MORE INFO... THANKS
JV <jval11@aol.com>
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my name is joy and i was diagnosed with wilsons disease in 1979 so i have had this for 22 years this may. back in may 1979 i was a happy normal child doing what children do, enjoying my school life. going out with my friends and so on. may the 16th i went to the cinema with friends and i ended up being carried out of the cinema because i had cramp from the waste down, well anycase i got home and was put to bed by my parents and everything was fine. i got up the next day and went to school, every body especially my friends kept on saying joy are you ok, i said fine, well by the afternoon i had become very yellow anf felt very tired i had heard of hepititis so i went to my teacher and said what do you think is wrong, she was quite worried and we need to get you home, ok i said and basically it all went from there. i arrived home and my mum phoned for the doctor who came out and i remember him saying that i had food poisoning but my mum was not happy with this so she got a second opinion the other doctor put me into an isolation hopital in watford and thats where it went from there.it took the doctors ten weeks to actually find out that i had wd by doing an eye test and they found copper rings there, they moved me to addenbrookes in cambidge which had the only doctor that new about wd. i was very sick when i arrived there, put into a room of my own, my parents were with me all the time not knowing what the hell wd was. dr j walshe started to treat me with penecillmeine but it did not agree with me so they put me on to trientine which i have been taken for the past 22 years, i have had very few side affects, swollon ankles sickness but really nothing serious. my mum and dad are both carriers of the disease so they were both very shocked when they found out. i am now 37 years old with a son called martin who will be 15 this year, my partner kevin and martin are very supportive towards me, and its great to know that this site is available for people with wd.
joy collins <joycollins@tinyonline.co.uk>
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My father died of Wilson's disease at the age of 47. He was diagnosed as a teenager, after having several severe seisures in a row. He was put on the penicillamine drug. It was very expensive and insurance did not pay for it then and he went off the drug at the age of 25 (thinking he would be fine - they didn't know much about it back then). Right after I graduated college, in 1997, he became jaundiced and started to have severaly swollen ankles and stomach. He had just gotten over a case of Bronchitis and was on antibiotics that turned out to be high in copper. He was diagnosed "again" and put back on the drugs and a low copper diet. He already had Hepatitis and chirosis of the liver by now, and it took the doctors a month to put him on the liver transplant list. They were so useless and acted like everything would be fine, and that it was still treatable. He was finally escalated to the number 1 spot on the transplant list a few weeks later, of course by now it was too late. His body was riddled with infections, his mind had gone, his jaundice had returned and sever fluid retention in his stomach and legs, finally he was only able to breathe through a machine and his heart was slowing. We lost him on Father's Day, June 15th, 1997, a month and a half after he had been re-diagnosed. I was so disappointed with the way the doctor's handled his case. No one knew enough about the disease and they took their time with everything. It only took a month and a half for the disease to escalate and kill him. And later while researching, I read that adults who show symptoms, usually have a very small chance of living, I wish the doctors could have at least prepared us for that. Anyways, I cary one gene for Wilsons, but am negative when tested, and am very thankful for this, and hope not to pass the gene on to my children. I thought I would share my story. I am grateful for this site, and pray for everyone who has this disease.
Heather Zelensky <hzelensky@proxicom.com>
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P.S. Anyone else out there with autistic/Wilson's children? Does treatment make a difference in the autistic symptoms?Thanks! Susan creativespark@earthlink.net
Susan Ryan <creativespark@earthlink.net>
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Dr.Stall, after reading your history I am more hopeful than I have been the past week since our 4 year-old autistic son's pediatrician phoned us to tell us his copper levels are at 250 and he may have Wilson's. I can't imagine him going through IV chelation - much less having his symptoms get worse after a hard-fought improvement. I will think of you and your improvement as we wait to see how things unfold. God bless you and thank you for telling your story.
Susan Ryan <creativespark@earthlink.net>
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Enjoyed browsing your site and learning more about your organization. Keep up the great work! Lisa Copen Director, Rest Ministries Inc. http://www.restministries.org


Lisa Copen <rest@restministries.org>
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Hi Everyone! I'm doing a school report on this diesease and it seems to be quite interesting. Anyone who has additional info, please email me in the next few days. Thanks much!
Brookie <coolbrooke1@excite.com>
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hello to anyone who can answer my question! i'm doing a report about wilson disease, and i'm very interested in it. I have found almost all the information I needed, but I need to know the first known case. my hearts and love is sent to all who have this disease.
Jennifer Davis <jnikki_davis100@hotmail.com>
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helloto anyone who can answer my question! i'm doing a report about wilson disease, and i'm very interested in it. I have found almost all the information I needed, but I need to know the first known case. my hearts and love is sent to all who have this disease.
Jennifer Davis <jnikki_davis100@hotmail.com>
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Hi Everyone, I was first diagnosed with Wilson's Disease in 1989. I was fortunate to have been included in Dr. Brewers zinc acetate studies. I am 90% recovered. I still have memory problems and I tremor only when I am stressed, exhausted or in pain. My speach is slightly slow and metered. I have devoted a section of my art website to that portion of my life. I encourage anyone who needs an inspirational story of another's struggle to regain control over their own destiny to click on my website. I was former Disney artist who's life was seemingly ruined by the neurologigical complications of this condition. Please visit my site and of course sign my guestbook. The specific wilson's link is My struggle with wilson disease. I wish you all the success and happiness I have found.
Lawrence (Lars) Elkin <larsne@ida.net>
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Hello everyone,i was diagnosed with WD Oct.1971 by Dr. Stephen Gupton a Neurologist at Raleigh,N.C. i was put on penicillamine 1,500mg aday and have remained on it for 29 years.Dr.Gupton retired this month and i have appointment at Duke the 10th of Jan.going to see if i can change my medication.I am in alot of joint and muscle pain and have developed EPS (lesions)which have had froze off 5 times,and biopsy showed it is a reaction from penicillamine.I have been very fortunate to have been able to take medication this long.I have never met or talk to anyone with WD,just found this site a few weeks ago.I think it is great.Judy
Judy Bowen <jhbowen58@hotmail.com>
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Hello everyone
Monica <paulaturcas@xnet.ro>
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hello Thomas William Walters, I've read your request but I can't make the letters of my messages bigger. I'm going to give you the sites again. this information is for everyone by the way. (it concludes sites about wd) I can't tell what kind of treatment you should follow because that depends on what kind of wilson you have.(I'm not a doctor but also a WD patient) So far I know there are at least 30 different mutation vorms of the wd. (maybe there are a lot more) Always consult your physisian or neuroligist Thomas if you can't read it because the letters are to small ask if someone else could read it for you. okay her they come: the Netherlands http://home.concepts.nl/~pcpoppel/ brazil http://www.doencadewilson.org Germany http://www.morbus-wilson.de romania http://www.wda-romania.org sweden http:sosweb.sos.se/mars/pub029/p29b46.htm or http://hem.passengen.se/wilsons/ england http://www.wilsons-disease.org.uk/index.html usa http://www.wilsonsdisease.org france http://www.orphanet.infobiogen.fr/associations/WILSON/WILSON.htm In the dutch site that i know very well because I am dutch you can click on links and many more sites about wilson will pop up The site were I learned much more about wilson for myself is http://www3.nbci.nlm.nim.gov/htbin-post/Omim/dispmim?277900 I'm also a wd patient. I've given you all the information about wd and links that i know off. I wish everyone who reads this good luck (especially Thomas William Walters) and a happy 2001 too. And remember NEVER GIVE UP THE FIGHT AGAINST WD. I have won the battle and I know in my heart that there are people among you that will do too Rick Wormer
Rick Wormer <laurentiaenrick@hotmail.com>
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I lost my sister to WD in 1974. She was first thought to have died of hepatitis. When I became ill in 1980 they ran blood tests and thought I had mono or hepatitis. When I still wasn't recovering my parents became even more concerned and contacted an old friend they knew that worked at the Mayo Clinic. They then flew me out there and I was diagnosed with WD. I started on penecillimine in 1981 and have continued on it for nearly 20 years. I was also able to have 2 children. I was advised to go off the cuprimine (generic name for pennicillimine) during my pregnancy. I was told that the placenta would absorb the copper from my system. I'm happy to say that it worked for me. I have 2 VERY healthy children. I am able to work and lead a normal life. I do tire easily. But I've just made my health a priority and simply turn down things if I'm too tired to go. I have also switched to working part time. That has helped me quite a bit since I am able to get proper rest. My advice is to hang in there, take your meds, put yourself first, get lots of rest, watch your copper intake. Read those food lables. You'd be surprised how much copper is in certain foods!!!!! I've had to compromise buying a lot of things since I only work part time, but it is well worth it to be able to rest and be healthy enough to spend time with my family and friends. Best of luck to you all!!!!!
J.T. <bgllvr4@aol.com>
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I would like to get some more basic ino if possible. Why? My mother said something to mutch and probabely she has Wilsons Disease. So i would like tpo inform me What to do, How to do it properly Thanks in advance all the best for 2001
Tof <Tof71@yahoo.com>
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hello Thomas I have also An other site for you this site concludes Table of contents desciption of wilson disease clinical features clinical management mappping molecular genetics diagnosis animal model history List of allelic variants references see also contributors I've learned a lot about wilson disease from this page wilson disease is also known as hypatolenticular degeneration That's the scientific name You must type exactly the following to view the site http://www3.ncbi.nlm.nih.gov/htbin-post/Omim/dispmim?277900 It's a lot of information about wilson's disease take your time to read it I wish you good luck and lots of strentgh to Rick Wormer
Rick Wormer <laurentiaenrick@hotmail.com>
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this message is for Thomas William Walters. Hello Thomas, I'm not a doctor so I can't tell you whether you should zink sulfate. I can give you the dutch site so you can read about zink sulfate yourself. Don't try to obtain it yourself. Always cosult your physisian or neuroligist. Print it for instance out and let them see it. Chapter treatment. in dutch it is called behandeling. I can tell you about my experience with zink sulfate. For me zink sulfate is just a miracle. it has no side affects on me. I must take a capsule 400 mg threetimes a day. Within a year I was back on track. A year ago i could not walk or talk had severe balance disorders was drooling constantly,my head was bouncing terribly up and down In short I had all the wilson symptons but the version of wd that i have does not effect my liver it took the doctors long before they discovered what's wrong with me. So I have also the Wilson diseaese but not the classical version but a mutation form that has influence on my central nervous system tI have the neuroligic version of Wilson disaese and there i have a mutation from. Don't ask me what that mutationis called because i I don't knom the scientific name. Did you know that also animals can get the Wilson disease. For instance dogs. I also use a low copper diet I can't tell you either whether you shoud use that. My advice is go to your physisian or neurologist and ask him about zink sulfate. The dutch siteis http://home.concepts.nl/~pcpoppel/ In that site you can switch to the english site This site also contains links to other wilson disease pages and low copper diets pages I wish you good luck I know for myself how difficult it is to cope with wd Rick Wormer
rick wormer <laurentiaenrick@hotmail.com>
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my name is rick wormer I'm 32 I was diagnosed with wd in the beginning of 2000.It took about five years before they discovered that i had wd In those five years my symptons worsened. In the beginning of 2000 i had a mri scan and in both my eyes I had dark kf rings. this hadn't been noticed before because of my dark brown eyes The doctors saw tehen that there was a great copperaccumulation in my brain in my cenmtral nervous system in my eyes but not in my liver.They discoverd that I had a mutation from the classical wd So I have the neurologic version and by the end of 1999 i could barely walk could not write or hold something in my hand due to the tremors. I was constantly drooling. My head was bouncing up and down. I was talking very slowly, had balance disorders, problems with swallowing In march 2000 I was put on zinc acetate and it is now december 2000 and all the symptons that I had disapeared and I'm functioning normal. I must take sink acetate for the rest of my life but it is worth it. If you are diagnosed with wd fight it as hard as you can and take your medicine on time. This will not autimatically mean that you will recover, but it is possible. Take for instance myself
rick wormer <laurentiaenrick@hotmail.com>
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i am just a concerned student who is doing a report on the disease. if anyone has information on the disease contact me at photodusty86@aol.com. thanks
dustin niehaus <photodusty86@aol.com>
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Hello. I am almost diagnosed with WD. I have one more test to have on Wed(eye exam) and then hopefully I will be able to start medicine. If anyone would like to email me please feel free to.
Sarah Marchuk <sbmusic@tm.net>
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hell-o & thank you for your time???!? I know you do this for free, but why haven't you, up-dated, any of the history, for about 3 years now??!? if you need help just ask butch isitart@worldnet.att.net isitart@att.net
Butch <isitart@worldnet.att.net>
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I have yet to use this site. AsI get a chance to use I will comment.
jbrunelle <attp/www.@jbrunelle.net>
anchorage, alaska United States -
this gave me alot of info for my research paper thanx!
maria <m_covall@yahoo.com>
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This site is one of the many ways to touch peoples hearts from all around the world, great job erik
Belinda <Pesabel@excite.com>
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excllent and very humanly site. good luck. there are many still not popular medicines in the traditional ayurveda. i know a silent ayurvedic physician here who has saved many cases written of by hitech allopathic experts. iam a witness to the case of a youngster with juvenile diabetis whose leg was to be amputed below the knee. the above physician treated and the man is happily walking on both legs with well controlled blood sugar. this is just one example. let us all realise that every school of medicine has it's own specialities. where one fails another might simply clear the case. please do not take this as an advertisement. I am only giving information to the many who would be standing at the edge of their life, according to one school of medicine.
U.K. Menon <bharathamuni@satyam.net.in>
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excllent and very humanly site. good luck
U.K. Menon <bharathamuni@satyam.net.in>
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I have WD. I was diagnosed in 1988 at the age of 23. My symptoms began in 1984 when hematuria was discovered during a college physical. A kidney biopsy was done and a diagnosis of glomerulonephritis was made but the nephrologist had no explanation as to why i had this. In 1986 I moved to Alaska, where my symptoms began to worsen. I was severely depressed and highly suicidal. My personality changed and I began having slight tremors in my hands. I don't remember too much of this period, but I do remember looking in the mirror one day at my eyes and thinking "didn't my eyes used to have more green in them?" and then telling myself it was probably just my imagination. On one evening, my boyfriend at the time hadasked me what was giong on, I told him I didn't know, then I started freaking out. I locked myself in the bathroom, tried to punch the window out, and just went crazy. He talked me out of there and asked me if I would like to check into the hospital for observation. I told him yes, because I wanted to know what was going on with me, I wasn't myself anymore. I was in the hospital for two and a half weeks in 1987. My handwriting was illegible and I had the hand tremors and that was what I wanted to find out about. I kept asking the doctor why were my hands shaking. The doctor said we can do an MRI, but you can't afford it (I didn't have insurance, but was in the process of applying for medicaid), so we'll do a cat scan. The cat scan was normal as far as I know. I was diagnosed with Major Depression, told that the tremors were a result of anti-depressants (even though I repeatedly told anyone who would listen that I had tremors BEFORE taking any meds)and sent to a halfway house after I was finally taken off suicide watch. I was in the halfway house for a few months and then I moved into my own apartment. I got worse and worse. By the end of 1987 I was having terrible trouble with personal hygiene, I would drop things like dishes and cups before they would make it to the table. My tremors were very bad. I went back into that halfway house because I was having great difficulty taking care of myself. In April of 1988, I attempted suicide again. This time I was placed in the state mental hospital. Again, I kept wanting to find out why my hands were shaking. In one of the morning meeting I remember I raised my hand and asked the attendant, "when are you going to find out why my hands are shaking?" He looked at me and said "They're not shaking now!" So they put me on some medicine, I don't remember what the name of it is because they thought the tremors were caused by tardive dyskinesia, which is involuntary movements caused by taking anti-psychotic drugs. Again I tried telling them that I was shaking before I ever took any meds. No one listened. Anyway, this new medicine they tried makes your vision blurry. They didn't tell me this. The next day I went to read a magazine and I couldn't see the words. I thought that something else had gone wrong with me. I was released from there back to the halfway house, where I got progressively worse. I had terrible tremors, if I was walking and stopped, I couldn't pick my feet up off the floor to get going again. My speech was indecipherable, like I was talking with a mouth full of marbles. I could barely feed myself. They were finally starting to realize that I had something more wrong with me than depression or mental illness, but they still had no clue. It was that boyfriend that I mentioned earlier who was instrumental in getting me the correct diagnosis. We weren't dating anymore, but we remained friends. He would come visit me at the halfway house, since he was the only person I really knew in Alaska (we had both moved here from upstate New York, he arrived first and me about 6 months later). Anyway, I never knew exactly how this came about until fairly recently, but he was the person who told my psychiatrist and caseworkers to check my copper levels and look for wilson's disease. They were thinking I had Parkinson's disease, and were getting ready to put me in a nursing home. Evidently, he had been talking with his sister about me all along. She was majoring in Physical Therapy. He told me that she called him up one night like at 1 a.m. and said she saw something in a footnote in one of her textbooks about the tremors. She asked him if when I went to do something, if the tremors got worse, or did they stop. He said they got worse, and she said "it's not parkinson's, have them test her for Wilson's disease!" Well, he had a tough time trying to get this meeting with my doctor and caseworkers, so he could tell them this. He finally had to tell them that he was the closet person that I knew in Alaska, I have no family up here. They finally relented and let him have that meeting and I thank God that they did and that they listened to him, because if they didn't, I'd probably be dead. I now have a wonderful husband, we've been married for 11 years now, and we have a five year old daughter, who has been tested and has come up negative for WD. We did have two miscarriages early in our marriage which I think were caused by WD, since we got married in July 1989 and I was diagnosed in August 1988. I take cuprimine, 1 250mg pill 4 times a day now. When I was first diagnosed my neurologist had me on 2 250mg pills three times a day. When I was pregnant I took 1 250mg pill three times per day, my daughter has had no ill affects that I can see from the treatment. I see a neurologist every 6 months and have my liver enzymes checked and blood counts done and all look good. I had one liver biopsy done in 1994 which also looked good. I still have lingering symptoms, like I can't write fast cuz then I can't read what I wrote, balance problems, fine motor problems and tremors when I have adrenaline bursts, such as, when angry or frightened. I would love to talk to others with WD. I hope people will read my entry, it sure felt good to talk about it. Thank you and God bless you!
Kecia Thompson <keciathompson@msn.com>
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All infectious diseases are based on natural electrical circuitries, but unfortunatly for our society, medical research is still in its infant stages in the year 2000!!! Natural nuclear power, generates currents through our solar system via distance, speed and light, as well as illuminations, meaning colour. Solar energy, reaches our anatomic circuitries through strands and cells, which react through heat waves and pulse signals. Solar energy is, speed, frequencies, imagery and unknown radiation, based upon minerals and consequently metals, which are magnetic. Understanding natural circuitries, requires understanding our five elements. The human central nervous system, consequently DNA and memory, are nuclear. The mind, is based upon rotations of primitive senses, which include, consciousness, emotions and physical. The brain is solar/nuclear, that is why it has dual function's, meaning, it can spin to the right or reverse. Reversal means, the brain, unlike the mind, is not based upon time, but rather speed, which can take us back in time to age 0-3 or beyond, consequently, cells will repair, restore and or regenerate. Within the human circuitries, we find, anatomic wheels, Isotopes, atoms, triangles, numerous webs, poles, cylinders, clocks - based upon anatomic time ect. Circuitries are "METALLIC", consequently they will infect and poison, through chemical reactions and gases. Understanding, how metallic circuitries arrived in the human system is complex, but only to the primitive mind, not to the intelligent brain, literally. Dormant brain cells are inactive brain cells, but open cells will give us phenomenal scientific information. Many scientist's are not clear about cellular tissue, consequently they do not comprehend, that tissue does sepperate into strips, which exposes metallic circuitries, which will cause inflamation do to dehydration. Sepperating tissue strips will allow fluids to enter membranes. Overloaded, overheated circuitries will react through heat factors an pulse signals. Pulse signals are received by our central nervous system, via our spinal cord. Within our central nervous system we find mercury. When mercury rises, energy increases, allowing strands to spin out of control, causing entrapments and consequently shortening, which than in turn allows atoms to come to close to blood vesselswhich will puncture vessels leaving them to bleed slowly like a sieve. Punctured blood vessels, allow gases and chemicals to enter stream, results are deadly. Metallic strands will effect bones, joints and organs of course. Activated nuclear circuitries will create massive light and consequently magnification beyond conscious comprehension. Understanding solar, magnetic pull and not confusing it with gravitational pull, leads right back to understanding our five elements. It is beyond my comprehension, why scientist's and researchers except iron atoms, which of course are connectors and conductors and yet they fail to understand the rest of our human circuitries ??????????????????
Ursula Swain <Ursula_Swain@telus.net>
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My sister was diagnosed with Wilsons Disease in 1994. She was diagnosed with no symptoms except for the KF rings. (She had had anemia like symptoms years previously that were later attributed to the disease). She has been under the care of Dr. Brewer in Ann Arbor and was doing very well until this past year. For reasons we're not sure of she became very sloppy with her meds and now she is severely symptomatic. She is unable to feed herself, needs help walking, drooling etc. A stomach tube was inserted to get more calories into her and to ensure her meds (zinc and TM) were getting in as well. It has been since July and we have seen no improvement - in fact she's worse. We're hoping for improvement but have no idea if and when to expect it. If anyone out there has been or knows anyone in a similar situation please contact me. The not knowing is very difficult. Also if anyone else has had any experience in non-compliance with meds or anyone else who would like to correspond. Looking forward to hearing from you. Lori Leibel dleibel@telusplanet.net November 21, 2000
Lori Leibel <dleibel@telusplanet.net>
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i'm dying
joe gezzar <gunner2531@aol.com>
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i'm dying
joe gezzar <gunner2531@aol.com>
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i have this diese and i'm dying
joe gezzar <gunner2531@aol.com>
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Hey, this website really helped me find out about WD. I chose it to do research on for a class project because I have an uncle with it and I wanted to find out more about it and this site was a major help to me
A learner
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I am a 19 year old boy from England who has been diagnoised at the age of 14 with WD. I started my treatment of penicillamine for about one year. Then my bone morrow reacted wlth the penicillamine, so i was forced to go on to trientine. I have now been on this ever since, i am now interested in finding out if there are any developments in the treatment of WD. Please if anyone has any info on the latest developments of WD please E-mail me. Thank You.
James Webster <jameswebster@hotmail>
London, Essex England -
I am a 19 year old boy from England who has been diagnoised at the age of 14 with WD. I started my treatment of penicillamine for about one year. Then my bone morrow reacted wlth the penicillamine, so i was forced to go on to trientine. I have now been on this ever since, i am now interested in finding out if there are any developments in the treatment of WD. Please if anyone has any info on the latest developments of WD please E-mail me. Thank You.
James Webster <jameswebster@hotmail>
London, Essex England -
I JUST WANTED EVERYONE TO KNOW THAT THERE ARE PEOPLE OUT THERE TRYING TO FIND THE CURE 24/7. PLEASE KEP THE FAITH.
CARLA SAINT
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Hi everybody. I have a Romanian friend who has been diagnosed with WD. She is looking for a medicine but she can not find it in Romania: Cuprenil (other names: Artamin, Distamine). For any help, info, support please write to Felicia Vieriu, Str. Aleea Pinului nr.5, Bl.I 11, et.3, ap.14, Botosani, BT, cod 6800 Romania. Thank you
Sorin Catalin Ciulei <catalinsc@yahoo.com>
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y am in love with a patient. It is another case. j, t, aime topita. siempre beucoup.
sento <topitos _2000@yahoo.es>
USA -
Hi, I'm Laia from Barcelona (Spain) I was diagnosed on WD when I was 15, after a liver biopsy which detected copper in it; I had not any sympyhoms and the Kayser-Fleisher ring didn't have copper. I was first on Zinc but after three years though my liver was excellent I started suffering from my joints: pains and swellings, specially in my fingers, knees and ankles. I was then changed to penicilamine 750 mg a day. Since then my liver still keeps excellent but the problem with my joints still continues. Does anyone Know if zinc and penicilamine have this side efects? Is it possible that WD afects only the joints? Has anyone a similar problem or know how it has to be treated? My doctors don't seem to know it. I'm desperated, I can't lead a normal life. Good luck.
Laia Villegas <laiav@hotmail.com>
- Monday, October 23, 2000 at 10:51:32 (CDT)
ANY ONE PLEASE HELP MY MOM IS SUFFERING WITH A DISORDER THAT HAS CRONIC ICHING AND TRIMBLING HANDS AND MUSCLE CONTRACTIONS. SHE BEEN TO SEVERAL DIFFERENT DOCTORS AND THERE PILING ON MEDICATIONS AND I VERY SCARED.i SEEN MY MOM SICK ALL MY LIFE AND ITS GETTING WORSE.SOMEONE PLEASE HELP
breanna <labreann68@aol>
- Sunday, October 15, 2000 at 00:20:46 (CDT)
I am doing a research paper for school on cirrohsis, and a few of the different types of diseases with it. If you can help me with some additonal information, it would be very appreciative. Thanx>
Laura <SWT_PEA_00_2000@yahoo.com>
- Thursday, October 05, 2000 at 20:20:59 (CDT)
Hi, I have had WD for 13 years. I recently have discovered the value of the Internet. From this site. When I stumbled accross this, I couldn't believe it. It is great to read all of your stories, and know that I am not alone in struggling with the mental and physical issues of this disease. I will visit it often. In the mean time..."Never Surrender"
LISA <lcoryell@tcunet.com>
- Wednesday, October 04, 2000 at 17:15:44 (CDT)
Hi, I have had WD for 13 years. I recently have discovered the value of the Internet. From this site. When I stumbled accross this, I couldn't believe it. It is great to read all of your stories, and know that I am not alone in struggling with the mental and physical issues of this disease. I will visit it often. In the mean time..."Never Surrender"
LISA <lcoryell@tcunet.com>
- Wednesday, October 04, 2000 at 17:15:07 (CDT)
I am bi-polar, and have been threw hell, and I do not get any respect from my doctors, I feel and I am just looking up my meds to be more informed
dizzy womack <CLLatham@msn.com>
- Monday, October 02, 2000 at 19:21:25 (CDT)
I HAVE DONE AN MRI OF BRAIN AS I WAS EXPERIENCING MILD NUMBING SENSATION AND ELECTRIC SHOCK LIKE FEELING IN MY RIGHT SIDE OF THE BODY. THE FINDINGS OF MRI ARE - SMALL LEPTOMENINGEAL NODULE SEEN AT THE POSTERIOR END OF THR LEFT SYLVIAN. FISSURE WITH EDEMA IN UNDERLINE BRAIN PERENCHYMA . INFECTIOUS GRANULOMA - SYSTICERCAL. PLEASE TELL ME IF THIS IS FETAL OR CAN IT LEAD TO TUMER IN MY BRAIN OR CANCER. PL ADVICE
Prashant S Shirodkar <shirodkar_prashant@yahoo.com>
- Thursday, September 28, 2000 at 23:27:44 (CDT)
Our daughter, Lauren, born 8-8-00 was diagnosed w/ tetrology of fallot.....she is a normal baby at this point, but she will obviously need surgery within the year....just looking for info, support
Rob Anderson <robsffan@aol.com>
- Thursday, September 28, 2000 at 01:07:07 (CDT)
These stories are so familiar to that of my son. Today it was suggested that he may have WD. he's 22 years old, and had several problems in school. He believed that chemicals could alleviate his thought patterns. In truth they may have, not that this was the answer to the problem. After over a year of putting up with the chemical abuses, we sought professional help. He was diagnosed as schizophrenic. I never believed it and as such, I was probably branded as being in denial. He's been on Risperdal,Prozac, and Cogentin for almost three years. He went to the hospital 2 days ago because he had become extremely yellow. Tomorrow in all likely-hood they're going to place him at the top of the list for a transplant. I'm sickened by the Menal health professionals who didn't have the knwledge to consider WD. I would think such a desease should be considered and checked out by these doctors. The main reason being, is the meds they prescribe can do damage to the liver. Those on the meds which also have WD, get a double whammy. Also I was wondering if those who have the desease stay away from shellfish which has a high amount of copper. My son consumes large quantities. Our prayers are with him and with you all.
Gary <gmstamp4@netscape.net>
- Monday, September 25, 2000 at 22:19:12 (CDT)
Hi Everyone, I was first diagnosed with Wilson's Disease in 1989. I have devoted a section of my art website to that portion of my life. I encourage anyone who needs an inspirational story of another's struggle to regain control over their own destiny to click on my website. I was former Disney artist who's life was seemingly ruined by the neurologigical complications of this condition. Please visit my site and of course sign my guestbook. The specific wilson's link is My struggle with wilson disease
Lawrence (Lars) Elkin <larsne@ida.net>
- Friday, September 15, 2000 at 08:50:23 (CDT)
my mother was diagnosed with WD in jan. '99 and died two weeks later. my siblings and i were all tested via ceruloplasmin, and 24h urine. our children thus far show no signs, nor do we. should we be retested? if so how often? no one seems to be able to give us a clear answer on this. i'd appreciate any input. thanks.
Lynne <slmoon@together.net>
- Thursday, September 14, 2000 at 16:21:28 (CDT)
Hello. I'm not sure whether WD is the culprit in this case. I just learned of it on the web yesterday while surfing the Schizophrenia websites. My son had Hepatitis as an infant. A liver specialist monitored his liver development at regular intervals until age 16. His liver had regenerated normally, according to his last test. Since then he hasn't been monitored. He is now 20 and exhibits some WD symptoms including strange posture, thought disorder, inverted sleep pattern, socially inappropriate behavior, fatigue, slow movements, and some motor skills problems. He can't throw a frisbee as well as he did when he was 12. Thru school he has been classified Learning Disabled - ADD. He cannot concentrate. WD jumped out at me because I have always wondered if there could be a link between liver problems and psychiatric disorders. If Justin's case sounds familiar or you have info that you'd like to share with me, please e-mail me! Thanks! Hank
Hank Williamson <da_hank@yahoo.com>
- Wednesday, September 06, 2000 at 10:08:16 (CDT)
Hi. I have a 3 year old daughter who was diagoused with wilsons in Jan 2000.Her improvment on penicillamine has been wonderful.I also have a 2 year old who has been tested by comparing a 24 hr baseline urine to a 24 hr urine on penicillamine.Does this relly mean he is free of Wilsons or should he be retested in the future?Thanks. Take care
JackieMetcalfe <jkhmetcalfe@hotmail.com>
- Wednesday, August 30, 2000 at 22:43:59 (CDT)
Hi everyone: I wanted to wish you all well, and let you guys know that I was very moved by all the stories here. I was diagnosed with Wilson's Disease in 1980, in high school. I couldn't concentrate, felt depressed, tired, had a lot of cramps in my legs and arms, and was starting to get tremors. I was very fortunate to be in a small private school where teachers noticed something was wrong (I went from A plus to F in Algebra in 6 months.) The school nurse told my parents to get me checked up, and I saw an amazing MD at NYU Hospital in New York. They found an enlarged spleen, low platelet count, noticed that I had "lack of affect". I was in the hospital for a month; they removed my spleen and discoved I had liver damage. They were going to releaase me not really knowing what was wrong with me, but my doctor wasn't satisfied and stayed up all night reading medical journals trying to figure it out. He fortunately thought of WD, they woke me up the next AM and gave me an eye test and saw the Kaiser Fleisher rings. I started penicillamine but was allergic to it; now I take Syprine 4 times a day and I'm fine. Since I was about 20 I've had no symptoms. I feel great, have a lot of energy, no more tremors or anything. I'm very fortunate as they think within a few months I'd have died. I hope my story gives people hope and also, I want to emphasize how vital it is to get excellent medical care and take your pills every day. Don't just try a low copper diet or you'll die. Don't stop your medication or you'll die. Get a first rate doctor. That's what saved me, I will always be grateful to the staff of NYU Medical Center, and to Drs. Schienberg and Sternlieb as well. Good luck! If you have any questions, please feel free to contact me. And check out www.wilsonsdisease.org
Elisabeth Keating <ekeating@uswest.net>
- Saturday, August 26, 2000 at 23:45:36 (CDT)
hello everyone,
nigel phillip wilson <wilson@post 8 .tele.dk>
- Thursday, August 24, 2000 at 10:17:29 (CDT)
Our son Nick experienced a gastric bleed first part of June and admitted to the hospital. Next day a liver came available and he got it did great and then 5 days later the enzymes elevated and he had clotted off his hepatic artery. He was put back on the list and the next morning they called and had another liver for him. He was retransplanted and discharged 5 weeks later after a few other complications. I have enjoyed this site much but now since the transplant has cured Wilson's I will probably search for a post transplant site to visit for new info. Thanks for everything. Becky
Becky Pitre <okla4all@aol.com>
- Wednesday, August 23, 2000 at 01:36:40 (CDT)
Our son Nick experienced a gastric bleed first part of June and admitted to the hospital. Next day a liver came available and he got it did great and then 5 days later the enzymes elevated and he had clotted off his hepatic artery. He was put back on the list and the next morning they called and had another liver for him. He was retransplanted and discharged 5 weeks later after a few other complications. I have enjoyed this site much but now since the transplant has cured Wilson's I will probably search for a post transplant sited to visit for new info. Thanks for everything. Becky
Becky Pitre <okla4all@aol.com>
- Wednesday, August 23, 2000 at 01:35:33 (CDT)
I AM A WD PATIENT SINCE 1972, MY BROTHER TOMMY WAS DIAGNOSIS WAS FIRST, TREMORS SLURRED SPEECH, STUTTERING, HAND TREMORS LEG DISCOLORATION, FAMOUS K F RINGS. LUCKILY I
THERESA A, MARTINEZ
- Saturday, August 12, 2000 at 20:30:45 (CDT)
I had a sister who was diagnosed with WD..but it was a diagnosis that came too late. My sister Heather went into the hospital in December of 1990 and by February of 1991 she was gone. She was only 4 months away from her 19th birthday. And I was only 11. If we had only known about WD and had these wonderful websites back then. She began to act differently her last year of high school doing things she normally wouldn't have done and we now know why. She was in the most fatal stages of WD and had a liver transplant. We thought she would make it and she was doing well for a few days..but then she crashed... I wish we would have had more information about WD back then..it may have saved her. But my heart goes out to the families and friends of those with WD and I wish you all the best....
Michelle <Princess0628@yahoo.com>
- Tuesday, August 08, 2000 at 19:36:40 (CDT)
I have a colleague,whose nephew has been diagnosed to be suffering from WD.I want further information on Zinc therapy as an alternative to D-Penicillamine.Please let me know the dose, and side effects, and potential interactions.
Dr S Pal <Sushyam.Pal@hpl.co.in>
- Monday, August 07, 2000 at 22:12:16 (CDT)
I am 20 years old and was diagnosed with wilson's disease around may 11 2000. i had slurred speech and my handwriting was awful so i had an mri blood and a 24 hour done next thing i knew i was in the hospital liver biopsy and put on the medication called trientene. but i've been nauseasous and weak 24/7. does anyone else have this nauseasnous cause i feel alone. i cry all the time but i know it will end soon and i will just be on zinc acetate for the rest of my life. well god bless you all and your in my prayers.
Christina Hulsey <jimcarrey3@juno.com or jprnces7@aol.com>
- Monday, July 24, 2000 at 22:51:54 (CDT)
My daughter 8 years old was diagnosed with WD last Sept 99, for us was really a shock as we didn't know anything about it. Thanks to the wilsonsdesease.org web site we were able to find out more about such rare genetic desease. Now she is under Penicillamine treatment as it seems the priority drug to reduce the copper level in the liver. She was found with 1420 dry coopper residual, on the biopsie test and I'm wondering if anyone knows how long it will take to reduce it such. Any comments you might have will be appreciated and let's hope with the God help and the new Genoma revolutionary discovery the WD will be cured. God bless you all
Steve Machetti <mac@netglobe.com>
- Saturday, July 01, 2000 at 01:12:25 (CDT)
hi, I am the boyfriend of a wonderful french lady affected by this disease,I never knew about this disease before, now i really get to understand a little of this unknown and awful disease.She attended last meeting in orlando (florida) of the WDA, and I only have words of gratefulness for the way she was helped. I really wish with all this improvements in the genoma field this disease disappears, but till then I really encourage everybody (doctors,pharmaceutical companies,patients,families, organizations)to continue with this magnificent job. thank you very much, and god bless you all. y a las autoridades espanolas especialmente investigar y ayudar al maximo posible en estos casos.
vicente <topitos_2000@yahoo.es>
- Friday, June 30, 2000 at 10:20:58 (CDT)
hi, I am the boyfriend of a wonderful french lady affected by this disease,I never knew about this disease before, now i really get to understand a little of this unknown and awful disease.She attended last meeting in orlando (florida) of the WDA, and I only have words of gratefulness for the way she was helped. I really wish with all this improvements in the genoma field this disease disappears, but till then I really encourage everybody (doctors,pharmaceutical companies,patients,families, organizations)to continue with this magnificent job. thank you very much, and god bless you all. y a las autoridades espanolas especialmente investigar y ayudar al maximo posible en estos casos.
vicente <topitos_2000@yahoo.es>
- Friday, June 30, 2000 at 10:19:14 (CDT)
I am the brazilian Wilsons'Disease Association's Vice-President and I am avaialable for to give some informations about the disease and to give suppport to Wilson's patients in Brazil - Informacoes em portugues no nosso site www.doencadewilson.org - hablase espanhol tambien
Lucio Mazza, from Brazil <oiculazzam@zipmail.com.br>
- Friday, May 19, 2000 at 10:11:19 (CDT)
I am the brazilian Wilsons'Disease Association's Vice-President and I am avaialable for to give some informtions about the disease and to give suppport to Wilson's patients in Brazil - Informacoes em portugues no nosso site www.doencadewilson.org - hablase espanhol tambien
Lucio Mazza, from Brazil <oiculazzam@zipmail.com.br>
- Friday, May 19, 2000 at 10:09:56 (CDT)
Hallo. My name is Ivo. I came from Croatia. First of all, I'm sorry if my grammar is bad, but I hope that You'll understand me. Lets go on subject. I have a girlfriend, who has WD. I know lots of things about it, but there is a problem that two of us can not solve. We would like to have a baby, but there aren't doctor in Croatia who can explain us all problems that has pregnant women whith WD. I'm not able to pay articles that I can order over Loansome doc or another books that I find on Internet. So I please anyone Who can Help us whit any information about Pregnancy in WD to send me a letter on my e-mail. P.S. We try two times, but she lost babys in second month of pregnancy. Thanks a lot. Ivo
Ivo <IHerzog1@excite.com>
- Friday, May 19, 2000 at 05:51:01 (CDT)
is it possible to cure the wilson's disease patient if ceruloplasmin of some animal is injected in the patient? is it possible to programe the diet so that the copper intake is the minimun?.
devinder singh <sevamindia>
- Thursday, May 18, 2000 at 09:51:01 (CDT)
I have had wilsons 27 years. I have been a patient of DR. cartwrite . Where I met carol Terry. That was in SALT LAKE CITY UTAH IN 1974. I have seen DR. BREWER, AND DRS> SHIENBERG AND STERNLEIB. On April 4 1973 I suffered a nerological crash. I whent fron almost normal speech and walk to no sound , not able to stand let alone walk, drooling tremors I felt like electicty going all though my body . it happened in less then a minute. Anyway , I have lived an eventfull life. 4 beautifull children , two grandsons and another one due anyday now. 6 husbunds. All my kids are from my second husbund. For years I racked my brain for something I could do . to make a little extra money. SSI & SOC> SEC. is preety hard to live on. Then last year I started writting my story . including many tips on how to survive a disablity. I am emintly qualified to do.T hen last fall the Relief socity in my ward started making baby quilts for Bosnia..I made several, They were preaty good too. I also am a good cook, My cinnamon rolls are almost as good as my Grandmothers. She was the head cook at the school. So I came up with an idea . GET a computer and sell over the Inernet. I hope you all will support me in this endeavor.
LINDA REBECCA THOMAS <eveningstar1@altavista.com>
- Saturday, May 06, 2000 at 12:37:08 (CDT)
The dad out there that mentioned us to the UCLA doctor we both see drop me a note. I understand you have two kids with Wilson's and wanted to know about Zinc. Pire
Pitre <okal4all@aol.com>
- Tuesday, May 02, 2000 at 08:35:57 (CDT)
Gene Analysis Offer for Europe only Dear Doctor, dear researcher, Gene Analysis Service GmbH provides a variety of diagnostic services. One of our services, the screening for ATP7B gene mutations, is an important analysis in the early diagnosis of Wilson Disease, an inherited disorder that causes copper poisoning of the liver and the brain. The copper transporting ATPase ATP7B has been recognized as the gene that is defective in Wilson Disease. Apart from a common mutation in exon 14, many individual mutations in the protein coding exons, as well as in intron sequences of this gene have been reported in patients suffering from the disease. When suspecting Wilson Disease, we routinely amplify and sequence the target exon 14 from the genomic DNA of the patient. When exon 14 is free of mutations, we screen the remaining 20 protein-coding exons for mutations. Results of the screening of the above mentioned exons and their flanking intron sequences are usually available within 10 days after receipt of the sample. When a mutation is found, we recommend analyzing the ATP7B genes of the patient's parents or other relatives as a secondary confirmation and to detect carrier of the gene defect. The recommended scource for genomic DNA is EDTA-blood. A typical sample volume is 0.5 ml. Blood samples can be sent to us at ambient temperature. Other scources (e.g. prenatal samples, tissue biopsies or paraffin embedded material) may also be considered for analysis. For the screening of exon 14 we charge 110 euro. The price for the complete genetic screening of the ATP7B gene is 2300 Euro. This price includes DNA-isolation, PCR-amplification, fragment cleaning, double strand sequencing of over 6700 bases and reporting. Prices do not include VAT (for tax-free invoicing in Europe, please inform us of your international tax identification number). Our services are available 7 days a week. For more information please contact us by phone: (+49) 30-84707430, fax: (+49) 30-84707432, email: looman@snafu.de or mail: Gene Analysis Service GmbH, Goerzallee 253, 14167 Berlin, Germany. With best regards, Dr. Alfred C. Looman PhD President and managing director
Dr. A.C. Looman <looman@snafu.de>
- Tuesday, May 02, 2000 at 08:12:40 (CDT)
I would like to list out the details regarding the WD of my son. My son Bullet got high temp 107deg when we were travelling from Madras to Patiala, my native place. It was a 48 Hrs. 2200 Km., long journey during hot summer (Amb 43deg C). I poured cold water over his body continuosly his temp. will temporarily come down and again will rise to 107. I continuosly applied ice cold water over his head and whole body. His temp remained between 107 and 100deg. On reaching Patiala on 29-5-1996, he was got examined and he was found to have malaria and with treatment he got normal wihin two days. After six months of this , he started making excuses for not going to school.I got him examined and the doctors told that he is normal and nothing to worry, he was however given tab. Pacitane for a month.The doctor told me that he can be burdened with school homework. With this treatment his position got bad day by day and he was got examined since I observed that his left hand was going abnormaly back and was streched.The doctor got his ser. cu and ceruloplasmin checked which were found to be within limits.He was sleeping with full face forced in the pillow asnd we found that it was difficult for him to breath easily and while sleeping we used to take out pillow from his face but he will pick up the pillow and again sleep with the face forced into the pillow. Now even we find that he is sleeping in that posture. With time, his position was getting bad, I got him examined from some other doctor who again got his ser. cu and cerulo. examined.The cu=120micro gm./dl and cerulo=6.5mg/dl. The doctor told me that it can be WD and he put him on Pencillamine-250, one cap per day. with this there was no relief. MRI showed little spots in the basal gangl.region and the KF rings could be seen only with a powerful slit lamp. With six months on one cap of Pencillamine-250mg his position got worse and his both fists were closely tight and both his arms streched back,his knees touching the chin and had a curled up posture all the time and could not sleep for many days and could not swallow even liquid diet. In Jan 1998 he was airlifted to CMC hospital Vellore. The doctors there examined his ser. cu and cerulo. the cu=65micro gm and cerulo.=Nil. They advised 4 cap.of Pencillamin alongwith Baclofan,clonzapam,zinc sulphate,and diazapalm. His position improved with the treatment and physiotherpy. He could walk and speak to the extent of 30%. Within next 6 months his position further imrpoved and was able to walk without support and could talk to the extent of 50%. This improvement was continuing till Sep. 1999 when I had to give him Indian substitute of Pencillamine capsules.After taking these cap for six months. his position got bad and I intimated the positon to the doctors who advised me to increase the dose to 5 cap per day. with this increase there was no improvment in his position.I thought that Indian cap might be spurious and sent the cap for testing on 24.3.2000. The test house here has probably established a link with the manufacture and is not releasing the report. Though I have arranged the Austria made Artamin cap and my son has started improving a little but till now he is not speaking and is not able to walk and even cannot get up from the bed and the movement of hands is totally absent. His jerky movments has increased and cannot sit at one place for sometime. I would like to add that my wife is not related to me even remotedly. My first issue, a female died at the age of 5 with Indian Childhood liver Cirrhosis. My second issue a daughter had three openheart surgeries for his Tetrology of Fallot's and is doing well now. My next issue a male was having stone some malformation in the Kidney, he was operated in 1982 and when he was two year of age. This issue,Master Bullet ,was doing well in study,games and was quite active till his 9th year. His intellect is normal. I would like to add that my grand grand parents used to drink much all their life and remained non-vegitarian whereas I have never touched wine etc. and taking only vegitarian food . Can this be the cause for the diffence in genes since they were not having any disease. Why all my childre are suffering from genes based diseases. I would like to add that his ser. cu and ceruloplasmin levels differs much from time to time as within a week his cu and cerulo. levels are normal and in next the levels are totally below the normal levels.His penis size is almost double the normal size,this may give some clue in your research work. He has been on Pencillamine-1250mg, Baclofen 7.5mg, Zinc Sulphate250mg Clonzapam 1.5mg, Diazapam 15mg, Pacitane4mg perday since May 1998 within six months of treatment he was able to walk,and speak to the extent of 50% and afterwards slowly improving and upto Sep 1999 and now he is showing increased involunatary movement and jerks and he is not able to sit at one place for a few seconds. His both arms are for most the time streched back and almost lost his speech.kindly advise if the medicines given are in order. I hope I have been able to describe his position to some extent. I will be glad to give the specific information if desired. I WOULD REQ.U TO SUGGEST NAME OF TEST HOUSES FROM WHERE I CAN GET PENCILLAMINE TESTED FOR ITS EFFECTIVENESS. E-mail - sevamindia@vsnl.com Er. Devinder Singh Tel.Res. 91-0175-212709
devinder singh <sevamindia@vsnl.com>
- Saturday, April 22, 2000 at 04:08:25 (CDT)
I would like to list out the details regarding the WD of my son. My son Bullet got high temp 107deg when we were travelling from Madras to Patiala, my native place. It was a 48 Hrs. 2200 Km., long journey during hot summer (Amb 43deg C). I poured cold water over his body continuosly his temp. will temporarily come down and again will rise to 107. I continuosly applied ice cold water over his head and whole body. His temp remained between 107 and 100deg. On reaching Patiala on 29-5-1996, he was got examined and he was found to have malaria and with treatment he got normal wihin two days. After six months of this , he started making excuses for not going to school.I got him examined and the doctors told that he is normal and nothing to worry, he was however given tab. Pacitane for a month.The doctor told me that he can be burdened with school homework. With this treatment his position got bad day by day and he was got examined since I observed that his left hand was going abnormaly back and was streched.The doctor got his ser. cu and ceruloplasmin checked which were found to be within limits.He was sleeping with full face forced in the pillow asnd we found that it was difficult for him to breath easily and while sleeping we used to take out pillow from his face but he will pick up the pillow and again sleep with the face forced into the pillow. Now even we find that he is sleeping in that posture. With time, his position was getting bad, I got him examined from some other doctor who again got his ser. cu and cerulo. examined.The cu=120micro gm./dl and cerulo=6.5mg/dl. The doctor told me that it can be WD and he put him on Pencillamine-250, one cap per day. with this there was no relief. MRI showed little spots in the basal gangl.region and the KF rings could be seen only with a powerful slit lamp. With six months on one cap of Pencillamine-250mg his position got worse and his both fists were closely tight and both his arms streched back,his knees touching the chin and had a curled up posture all the time and could not sleep for many days and could not swallow even liquid diet. In Jan 1998 he was airlifted to CMC hospital Vellore. The doctors there examined his ser. cu and cerulo. the cu=65micro gm and cerulo.=Nil. They advised 4 cap.of Pencillamin alongwith Baclofan,clonzapam,zinc sulphate,and diazapalm. His position improved with the treatment and physiotherpy. He could walk and speak to the extent of 30%. Within next 6 months his position further imrpoved and was able to walk without support and could talk to the extent of 50%. This improvement was continuing till Sep. 1999 when I had to give him Indian substitute of Pencillamine capsules.After taking these cap for six months. his position got bad and I intimated the positon to the doctors who advised me to increase the dose to 5 cap per day. with this increase there was no improvment in his position.I thought that Indian cap might be spurious and sent the cap for testing on 24.3.2000. The test house here has probably established a link with the manufacture and is not releasing the report. Though I have arranged the Austria made Artamin cap and my son has started improving a little but till now he is not speaking and is not able to walk and even cannot get up from the bed and the movement of hands is totally absent. His jerky movments has increased and cannot sit at one place for sometime. I would like to add that my wife is not related to me even remotedly. My first issue, a female died at the age of 5 with Indian Childhood liver Cirrhosis. My second issue a daughter had three openheart surgeries for his Tetrology of Fallot's and is doing well now. My next issue a male was having stone some malformation in the Kidney, he was operated in 1982 and when he was two year of age. This issue,Master Bullet ,was doing well in study,games and was quite active till his 9th year. His intellect is normal. I would like to add that my grand grand parents used to drink much all their life and remained non-vegitarian whereas I have never touched wine etc. and taking only vegitarian food . Can this be the cause for the diffence in genes since they were not having any disease. Why all my childre are suffering from genes based diseases. I would like to add that his ser. cu and ceruloplasmin levels differs much from time to time as within a week his cu and cerulo. levels are normal and in next the levels are totally below the normal levels.His penis size is almost double the normal size,this may give some clue in your research work. He has been on Pencillamine-1250mg, Baclofen 7.5mg, Zinc Sulphate250mg Clonzapam 1.5mg, Diazapam 15mg, Pacitane4mg perday since May 1998 within six months of treatment he was able to walk,and speak to the extent of 50% and afterwards slowly improving and upto Sep 1999 and now he is showing increased involunatary movement and jerks and he is not able to sit at one place for a few seconds. His both arms are for most the time streched back and almost lost his speech.kindly advise if the medicines given are in order. I hope I have been able to describe his position to some extent. I will be glad to give the specific information if desired. I WOULD REQ.U TO SUGGEST NAME OF TEST HOUSES FROM WHERE I CAN GET PENCILLAMINE TESTED FOR ITS EFFECTIVENESS. E-mail - sevamindia@vsnl.com Er. Devinder Singh Tel.Res. 91-0175-212709
devinder singh <sevamindia@vsnl.com>
- Saturday, April 22, 2000 at 04:03:51 (CDT)
Wow!! You people are great! I wish my brother-in-law was online!Please feel free to E- Me about anything or anymore great treatments,options,etc.! Anything would do!!!LOVE TO ALL OF YOU!!!And, to the Aussies, My sisters & I's "MUM" was an Aussie too!! 1 sis lives in QLD.and we several others in the fam there too!! Any new treatments down there?Bye for now!! Hang in people!!
Vicki Pomeroy for Max Wellhoefer <vickipomeroy@hotmail.com>
- Thursday, April 13, 2000 at 08:56:24 (CDT)
My brother-in-law, as far as I know, has had ( Diagnosed ) Wilson's since early childhood. He is not doing real well at the moment, but tries real hard to cope! My hats off to all of you!!
Vicki Pomeroy for Max Wellhoefer <vickipomeroy@hotmail.com>
- Thursday, April 13, 2000 at 08:28:20 (CDT)
I came here because I had a liver biobsy done. Doctor suspected I had Wilsons disease. They didn't find anything but I still have improper copper levels. copper levels bad for many years.
I Loera <iloera@hotmail.com>
- Tuesday, March 28, 2000 at 23:16:20 (CST)
We have just come home from the hospital after a 5 day admission with jaundice, and hepatic encephalopathy and my son is now level 2B on the transplant list. We will get our beeper soon. We came home on more meds and we ask for prayers.
Pitre <okla4all@aol.com>
- Tuesday, March 28, 2000 at 01:08:42 (CST)
Hey how are u?well i'm doing a report on Wilson's disease and i thought i would drop in and say stick in there u all. i have to do a report on the disease in biology class and i wanted to ask you guys for more info on the disease. i would like it thanks Heather
Heather Wilson <h_wison@hotmail.com>
- Thursday, March 16, 2000 at 09:15:44 (CST)
My doctor suspects I have Wilson's Disease because of a low level of seruloplasmine in my blood. I need information about this health condition and could not find it. Please help.
Felix Rivera <frivera@pmalaw.com>
- Monday, March 13, 2000 at 07:34:35 (CST)
hi.. I was searching for information on WD since my doctor mentiond something about it during my last visit. I am 21 years old and two years ago i was diagnosed with Type 1 Diabetes. For the last two years it has been hard trying to change my living habits, and adapt to living a new lifestlye. Recently I decided that I would join a healthclub so I visited my Endocrinologist to discuss my diet whilst exercising. He noticed that the last blood tests I had done had shown that my liver enzymes were too high. He immediately took my off of Paxil (the drug that was controlling my Panic Disorder) and my allergy pills; hoping that was the cause. I was also sent to a liver specialist who believed nothing serious was wrong. I received a phone call from him two days ago saying that I had to do a 24 hour urine test because my copper was too high. I had never heard of anything like that. I had an appointment with my family doctor later that day, i mentioned the copper and he said, " oh.. wilsons disease" i asked him to further explain, but he said not to worry about it until i know for sure. Reading about some of the symptoms etc. im a bit nervous. If anyone could write to me about when they were first diagnosed i would greatly appreicate it. Thanks so much.
Paula Pheasant <mypaula@hotmail.com>
- Sunday, March 05, 2000 at 12:23:38 (CST)
I wanted to say thank you to everyone who has had some input to this website. i Had to do a research presentation on wilsons disease and because it is so rare it was hard to find information on . Because of this site i got a lot of helpful information from people who it affects every day. i was even able to establish contact with some people to get more help with my presentation. I am thankful and very appreciative and confidant that i will get a good grade on this presentation. Thank you all and God bless!
kelly williams <kelly_williams1@hotmail.com>
- Wednesday, February 23, 2000 at 11:24:30 (CST)
This is in response to Nan. I wrote you a note but it was returned wrong address. I would suggest a second opinion on your son Daniel. Our son was treated with the Zinc initially since he was a symptomatic but did have the liver involvement. But two years later when we moved and he had a second biopsy he was worse and now he is on Penecillamine and his body depleted of copper but we are in the process of getting him on the liver transplant list because his lab is not improving like it should. We are on our second doctor here and that would be my thought for your son. We see a doctor at UCLA. Becky
Becky <okla4all@aol.com>
- Sunday, February 20, 2000 at 01:41:32 (CST)
I am 25 years old. I was diagnosed with Wilson's Disease when I was 16. I had to have a liver transplant because the disease was diagnosed to late. I never had any symptoms that my family and I can remember. I got sick on a Monday morning and went to my family doctor and he thought that I had hepatitis and he put me in the hospital. From there, I was transferred to Children's Hospital were the diagnosis was made and the doctors there gave me 24-hours to live. I was given top priority on the transplant list and received my transplant at the 15 hour. I am doing great. If any one wants to talk, let me know.
Nicole Soe <stoeabh@nb.net>
- Saturday, February 19, 2000 at 21:29:48 (CST)
I wrote to this site on Feb 6th. For anyone who might be interested please check out the Wilsons Disease Support Group - UK website at the following address: http://wilsons-disease.org.uk Lot's of info of what we are trying to do, newsletter,guestbook etc... can be found here
caroline simms <carolinesimms@hotmail.com>
- Tuesday, February 15, 2000 at 14:56:20 (CST)
I wrote to this site on Feb 6th. For anyone who might be interested please check out the Wilsons Disease Support Group - UK website at the following address: http://wilsons-disease.org.uk Lot's of info of what we are trying to do, newsletter,guestbook etc... can be found here
caroline simms <carolinesimms@hotmail.com>
- Tuesday, February 15, 2000 at 14:55:38 (CST)
My son Daniel was diagnoised in October of 99. Now that we know about Wilsons Disease, he had symptoms long ago. But in the beginning of summer is when the neurological symptoms started. It started with his speech then his walking, then his handwriting, also when eating he could not keep his mouth closed. At first we just thought he was talking too fast, and asked him to slow down. Anyways everything remained, so we took him to his peditrician, who ordered an MRI. We got a call on Sunday night asking us to bring him into the hospital the next day. My heart stopped, because at first I thought he had a brain tumor. We brought him into the hospital the next day, where they did more tests. The neurological doctor took us into a room and said that Daniel had a disease at first I was relieved, thinking just get rid of the disease But then he told us what it was, Wilsons Disease. How scary that day was. The more we read about this disease, we saw the seriousness of it. The doctor was hesitant on treating Daniel, and went on the internet and found Dr. Brewer in Ann Arbor MI. We were there within 5 days. At first my son was ok, he was having trouble speaking, but you could still understand him, he was having a little trouble walking, but still he could walk on his own. His writting ability went completely away though. I had to write his homework for him. After about 1 month of being at the hospital and being on treatment (TM) my son took a turn for the worse. His speaking ability completely went, he could no longer walk without assistance. He could not swallow and had a stomach tube put into his stomach. He had great emotional outbursts, and he was having severe spasms. We took him off the drug TM when he started to get worse. He also had lost about 11 pounds while there. They kept him on Zinc Acetate. We were sent home after the 2 months and on December 18th we came home. He was severely depressed by that time and was continuing to loose weight. We made an appointment with the neurological doctor that had diagnoised him, and because of his emotional state and the fact that he had lost so much weight, we had to put him back into the hospital. He was there for 2 weeks and was beginning to gain some of the weight back, and was receiving re-hab. He was doing better until he got the flu. He then lost the weight he gained, and his ability to walk worsened. He still is not able to walk without assistance, and now he has lost about 14 pounds. Because of the emotional outbursts he has he burns up so much calories. We are trying to now get more calories into him, which has not been easy because of the stomach tube. he is receiving a lot of therapy now, physical, occupational and speech. There has not been a lot of improvement yet but we are proceeding ahead. Has anyone experienced the emtional outbursts that my son has. He is on Zoloft now for depression and Ativan and Valuem for aggitation. But that has not completely helped. Also has anyone experienced the weight loss, and how did you gain it back. He is havingg a lot, his appetite has increased, but because of having the flu and the emotional outburst he is still loosing. Does anyone know of weight gainer that does not have a lot of copper in it. We are still in the midst of this disease. I know that in time he will get better. And I do thank God for all the support of my family members and friends who have helped me. Nan
Daniel Greulich <canyongb@uswest>
- Saturday, February 12, 2000 at 07:50:10 (CST)
I am humbled, reading the stories and info here.My x-husband died of Wilson's in '87. We have 2 girls together. Because I only recently found out about the illness he died of, my girls were just tested, no results back as yet. They are 21 and 23. The older girl, her doc says she must be re tested every year; that the gene(which she and her sister are 100%carriers of)can suddenly mutate. Has anyone heard of this? My undrestanding is that it is impossible for them to have it, as I must also be a carrier? This site is wonderful, and I thank you for it.I wait in fear for their test results.
Doris <lesieur@island.net>
- Wednesday, February 09, 2000 at 10:25:25 (CST)
Hello, My name is caroline and I was diagnosed with WD in 1987 aged 14 showing severe neuroligical symptoms. I have successfully been on trientine since my diagnosis and feel much better than I did 12 years ago. Despite my successful decoppering my liver appears to be causing me a few problems, mainly hepatic portal hypertension, grossly enlarged spleen and oesophageal varicies. I am waiting for a liver tx. Despite my struggle I have just recently got my PhD in bio-organic chemistry and I am busy contacting other WD patients in the UK (I am coordinator of the Wilson's Disease Support Group - United Kingdom which we've recently set up). It is a truely wonderful thing to have contact with other people with WD, their families, friends and to know that there are so many people who have courage and determination, despite what life throws them. You are all an inspiration!!! By promoting a better awareness the existance of WD, hopefully people can be diagnosed earlier which as many of you know can be a crucial factor in patient recovery. Keep up the good work!
caroline simms <carolinesimms@hotmail.com>
- Sunday, February 06, 2000 at 14:12:43 (CST)
im in school they made me come here but its not that bad of a site,
TRump Kleinsteuber
- Wednesday, December 15, 1999 at 08:39:32 (CST)
I have just discovered the existence of Wilsons Disease and understand the problems with copper. Our company markets a comprehensive range of water treatment products that includes fine filtration for metal reduction in water supplies. If anybody would like any information please contact us.
michael ward <sales@softeners-filters.co.uk>
- Thursday, November 25, 1999 at 08:35:20 (CST)
Hi everyone! My brother was diagnosed with Wilsons (I believe in '92)--his name is Erik too! My father died of the disease only about one week after diagnosis. Great info. on this site. Wilsons is so rare, it is nice to be able to find so many people in one place who are familiar with it. Keep it up. Thanks.
samantha <samanthaflint@mailcity.com>
- Friday, November 05, 1999 at 13:06:47 (CST)
Hi, I'm not a sufferer of WD. But I am still very grateful for this web page. I will pray to ALLAH for you all. May ALLAH be with you all. I have actially been asked to reserch WD as an assignment. This has to be the first time that I have actially been happy to be given an assignment. I'm not happy that such a desease exists. I'm happy cause I have been able to read about all of you. Thankyou for this web page.
Robia Sowaid <Hezbollah@bolt.com>
- Saturday, October 23, 1999 at 18:59:23 (CDT)
My name is Brendan and I am 13 years old. Iwas recently diagnosed with Wilson's disease in August of '99. I first got sick in April and it took 4 months for the doctors in Melbourne to diagnose me. What happened was I was getting realy sick in the mornings but feeling pretty good at night. So I went to my G.P. and he sent me to have a phew blood tests and stuff but none of them were positive. So eventually he reffered me on to a Consultant Physician who also gave me blood and urine tests but none of them were positive either. Then he done a stomach biopsy and said I had ulcers in the stomach which were from all the vomiting. then i had an A.F.B. urine test which said I had to many white cells in my urine so he sent me to another C.P. who said I had T.B. in the kidneys.When I went back home the other C.P. said that I didn't because of the liver readings. I had an I.V.P. and was scheduled for more tests but 2 days later I was in hospital with Jaundice. So in hospital I had a liver biopsy and said I had non-viral hepatitis with cirrhosis But the doctor still didn't diagnose me. So the he reffered me to a liver specialist in Melbourne and he diagnosed me with Wilson's Diseaes. I started treatment immediately and was in hospital for another week Incase I had a reaction to the Medication.The tablets are called Pyrodoxine and Penicillamine. Now I am not as sick in the mornings but an very weak during the day. I am back at school.
Brendan Kamps <kampsy@hotmail.com>
- Friday, October 22, 1999 at 19:41:05 (CDT)
I am a third year clinical pharmacy student at the College of Pharmacy at the University of Texas at Austin. I am working on a presentation on Wilson's disease and its associated pathology, diagnosis, and therapeutic options and greatly appreciate the information that is available on your website about the disease. Reading about patients and their personal experiences is much more informative for me because of the particular nature of the disease and how to recognize symptoms to avoid a late diagnosis of Wilson's. After all, treating the patient is also an integral component of treating the disease and the patient histories I read about added a personal touch to the disease by discussing how the disease and therapy is affecting patient lives. I commend all the members of this organization for providing support and news groups for other members to interact with each other. This is an excellent way for healthcare providers (and patients) to be well informed about the disease and for us to be able to treat the patient promptly and effectively without further complications. Keep up the good work!!!
Shital Patel <shital@mail.utexas.edu>
- Friday, October 22, 1999 at 14:04:41 (CDT)
We have written in before and everytime I read the site I see how lucky we are and how miracles can and do happen. It is also encouraging to see and hear about all the other families who are living with Wilson's and doing well. My son Nick is on Cuprimine now after 2 years on Zinc. He is l5 and 2l/2 years from diagnosis. He is dumping 5x the normal amount of copper in his urine now and our enzymes are still high. We will rebiopsy in August and the dr. is still hopeful we can avoid a transplant but not sure. Reading about the successes here gives me hope no matter which way we have to go. Keep up the good work with this site and everyone out there know you are not alone. Becky
Becky Pitre <okla4all@aol.com>
- Monday, October 18, 1999 at 01:00:42 (CDT)
I was diagnosed with Wilsons disease in May of 1999 and completed my 8 weeks of treatment on 8/27.I am already showing improvement but you get impatient sometimes and want to be all the way back. Hopefully, I will some day.
Karl Reichardt <icrecruiter@mindspring.com>
- Thursday, October 14, 1999 at 19:45:12 (CDT)
Great site. Keep up your good work. I've WD myself and I am the webmaster of the German Wilson's desease association's site. I hope you'll visit our site, too. Stefan
Stefan Sandler <webmaster@morbus-wilson.de>
- Sunday, October 10, 1999 at 13:34:32 (CDT)
I was diagnosed with WD Jan 95. I was 19 years old, about 2 weeks away from 20. I am 24 now. I was air transported to a transplant facility after being hospitalized for 2 days. I was falling asleep standing up and had fevers. As a collegiate athlete, I knew something was wrong. I had mono when I was in HS and my trainer noticed my liver was enlarged. I wasn't able to donate blood or plasma because my liver enzymes were too high. I was told that was normal because I had mono a few years back. I never worried because I felt fine, had an active life and was able to take 19 credit hours, play VB (NJCAA) and hold a part time job. A week after I fell asleep while waiting on a table, I was helicoptered to Tucson and diagnosed with fulminant hepatic failure. I was UNOS 1 and transplanted Feb 3. Because of a severed hepatic artery in the donor liver, it failed. I was tx'd again Feb 11. My bile ducts clogged and compromised the tx. The ducts were reconstructed and I was listed UNOS 3 for a year and 3 months. I went to UNOS 1 in Feb 1997, tx'd March 9 and the graft immediately failed (primary nonfunction). I was UNOS 1 again and tx'd March 14. I was out of UMC 3 weeks later, feel fine now after 4 liver transplants and 3 other surgeries. I am 2 years 6 months out of my last tx and doing great. I really believe miracles can happen. I am one! My older bro and 2 younger sisters also have WD, they have some cirrhosis of liver and take penacillimine. The girls recently switched to zinc therapy and so far are doing great. They have no other symptoms aside from liver damage and the elevated copper levels. The only strange thing I've noticed is a severe headache with an uneasy 'de ja vu'-like feeling. It happens about once every 2-3 months. Has any one else ever had anything like that happen? I'd love to hear from other WD's and also WD's with transplants. After tx, has anyone had trouble with copper levels? This is a wonderful website, I just found it and I enjoyed reading all other histories and guestbook sign-ons. My history is in now, too! Take care and God Bless. The Lord answers prayers! Keeep up the fight-it's worth it.
Julie Ryan <Julie.Ryan@crosslandmortgage.com>
- Friday, October 08, 1999 at 16:11:44 (CDT)
My Mother died in January '99 of WD. 2 weeks after her diagnosis.
LMLM <slmoon@together.net>
- Thursday, October 07, 1999 at 19:43:26 (CDT)
I am a 31 year old feamale. I was dignoised with wilson's last year at the age of thirty. I have had liver problems all my life.I tried one drug and it made me sick right now i'm on syprine. I am haveing alot of nurological problems.If some one could help me with the nurological prblemes. Or are having some of there onw would you please e-mail me.At cooper@louverture.com thanks Tina
Tina Cooper <cooper@louverture.com>
- Wednesday, September 22, 1999 at 20:54:17 (CDT)
Please feel free to email me! Im a 25 year old female currently on zinc acetate. Id love to hear from Wilson's patients and/ or their families
Cindy Gustitus <cgisbrat@worldnet.att.net>
- Sunday, September 19, 1999 at 17:55:30 (CDT)
Hello Everyone. I am so happy to have found this site. I am 25 years old. Last year, at the age of 23 I was diagnosed with acute auto-immune hepatitis. Within three weeks I was hallucinating and on the verge of death. I was admitted into Henry Ford Hospital (Detroit) and immediately put on the priority list for a transplant. I only waited two days. Post transplant, the pathology revealed that there was a high copper content in my old liver. My doctors now believe that it was Wilson's and not auto-immune hepatitis. Today, I am doing extremely well. I just started teaching Kindergarten and my husband and I are considering starting a family next year. KEEP THE FAITH...MIRACLES HAPPEN! Beth Trudeau
Beth Trudeau <trudeau@prodigy.net>
- Thursday, September 02, 1999 at 16:02:17 (CDT)
I AM A 44 YEAR OLD MALE. I WAS WORKING IN A FOUNDY IN PORTLAND OREGON. I GOT A SLIVER OF METAL IN MY EYE AND HAD TO GO TO AN OPTOMITRIST TO GET IT REMOVED,THIS WAS THE LUCKYEST DAY OF MY LIFE.HE DID THE SLITLAMP THING AND DESCOVERED K-F RINGS.HE SENT ME TO THE OHSU HOSPITAL AND THEY TOLD ME OF THE DESEASE.YES IWAS FREAKED OUT, THEY DID A LIVER BI TO CONFERM AND IT WAS WD.I HAD JUST CLEANED UP FROM ALCOHAL/DRUGS AND WAS HAVEING TREMORS AND THOUGHT THAT IT WAS FROM THE DRUGS THAT I WAS USING BEFORE IGOT SOBER. IAM STILL SOBER AND THE WD SEMES TO BE UNDER CONTROL. I WAS DIANOSED OCT.1983 AND AM STLL ON THE PENN. IAM GREATFUL 4 ALL OF YOUR STORYS GOOD LUCK IN LIFE AND KEEP THE FAITH JERRY
JERRY BARTEE <YOUR_BRO@YHOO.COM>
- Thursday, September 02, 1999 at 06:58:04 (CDT)
my name is andrew hillan in 1992 whilst serving aboard HMS Cromer in rosyth i felt stomach pains but passed them off as eating takeaway food the night before however the pains grew worse as the day drew on and i asked to go to the sickbay where i was diagnosed as having appendicitis on arriving at queen margeret in dunfermline in fife i was prepared for surgery for the morning but in the morning i was seen to have become jaundiced and moved to an isolation unit then moved to an infectios diseases unit at windygates in fife where after five days i collapsed and became critically ill and was only diagnosed on the thursday on the friday i was moved to edinburgh royal and put into ward 20 which is an alcoholics ward i can only assume i was put there to die however i did not and on saturday i was flown to queen elizabeth in birmingham where my parents were told i would die i did not and on the tuesday i was prepared for transplant it failed and i shed six stone in weight after acute rejection i never got off the critical list for two months after a second transplant i got home in eight days i am now as fit as ever i was in fact healthier and i would like to take this opportunity to thank the staff of the liver transplant unit at birmingham note this if you provide the will, they have the knowledge and the equipment ,you must never give up
Andrew Hillan <andrew.h@ukgateway.net>
- Thursday, August 26, 1999 at 13:23:15 (CDT)
MY NAME IS JENNY AND I LIVE IN KENTUCKY. MY SON, MICHAEL WAS DIAGNOSED WITH WILSON DISEASE IN FEBRUARY OF 1998. HIS ONLY SYMPTOM WAS BEING VERY TIRED ALL THE TIME, AND AT 17 YEARS OLD I KNEW THAT WAS'T NORMAL. OUR MEDICAL DOCTOR BEGAN RUNNING TESTS AND BLOOD WORK AND IN A SHORT TIME AFTER SEVERAL TESTS AND A LIVER BIOPSY IT WAS CONFIRMED THAT HE HAD WILSON DISEASE. WE WERE VERY FORTUNATE TO BE SEEING A DOCTOR THAT HAD SEEN A WILSON DISEASE PATIEN BEFORE, SINCE THIS IS SO RARE! HE IMMEDIATELY WAS STARTED ON SYPRINE 4 TIMES A DAY AND HAS DONE GREAT. HE HAD NO REACTIONS TO THE MEDICATIONS AND FOLLOWED THE ADVICE OF HIS DOCTORS LETTER PERFECT. HE HAS JUST NOW BEEN STARTED ON GALZIN AND IS DOING GREAT SO FAR. THIS WEEK HE WILL BE ENROLLING AT A PRIVATE COLLEGE IN A NEARBY TOWN AND I AM A VERY THANKFUL MOTHER, BECAUSE IS KNOW HE HAS BEEN A VERY FORTUNATE AND BLESSED YOUNG MAN. GOOD LUCK TO ALL THE WILSON DISEASE PATIENTS AND TO THIER PARENTS!!!! HAVE A GREAT WEEK! JENNY WWW@JABESHOUSE.COM
JENNY SMITH <WWW.JABESHOUSE.COM>
- Sunday, August 22, 1999 at 19:22:01 (CDT)
I was diagnosed with W.D. at the Mayo Clinic in 1958 at age 21. I had been diagnosed with M.S. by my family doctor two years in 1956. I was first treated with shots of bal, extremely painful injections. Then when I chose to stop treatment because I found this to be intolerable I was put on carbo-resin before each meal. In 1959 I was switched to penicillamine, which I had a severe reaction to. Then I was put on a lower dosage of penicillamine and prednizone. eventualy the dosage was increased gradually of penicillamine and the prednizone was stopped after a year and developing an ulcer. I have taken cuprimine(PENICILLAMINE ) for 40 years until this May when my husband and I attended the W.D. annual meeting in Ann Arbor I brought information home to my doctor about Galzin and I am now taking Galzin and seem to be getting along fine. I am very fortunate to be alive. I have always eaten a low copper diet. I AM NOW 63 YEARS OLD !! I enjoy my two sons age 36 and 31 and we treasure our grandchidren.!!
Bonnie Inwood <bjinwood@erinet.com>
- Friday, August 13, 1999 at 22:10:32 (CDT)
Hi, I was diagnosed in Nov 1992 in Newcastle upon tyne, Thank you OJ and the team! Thankfully they caught me early my liver teasts returned to normal, However I am now getting other compplications which have sent my ALT sky high. Keep going lads. If anyone wants to chat I'm on ICQ wendy_newman@yahoo.com
Wendy Newman <w.l.newman@freeuk.net>
- Monday, August 02, 1999 at 13:55:52 (CDT)
Can someone please let me have information regarding diet limitations for Wilsons dis. sufferers. It is a great help having so much info. available on-line for such a rare disease.
Frances Grey <franal@wizard.net.au>
- Sunday, August 01, 1999 at 04:21:31 (CDT)
i aws diagnosed with WD after many months of going to doctors i was put on pennicilimine, but had side affects with it,i was then put on trietine where it had dramatic effect.
Jon Grey <lorraine@kisser.net.au>
- Saturday, July 31, 1999 at 03:27:19 (CDT)
i am a fellow sufferer of wilsons disease
jon grey <lorraine @kisser.net.au>
- Saturday, July 31, 1999 at 03:19:06 (CDT)
I was diagnosed with Wilsons on the 2 nd of June I was put on pencillamine but took an allergic reaction to it. So I am now on Trientene I am doing fine on this. I have just had my first Liver Biopsy. I am in hospital at the moment because I was complaining of a pain around my Liver two weeks and a day after My Biopsy They took some blood and it is fine so I am being kept in for the night for observation.Hopefully I will be let out later today. I live near to Newcastle Upon Tyne I'm 15 I like Drama, reading Books & love the playstation.
Andrew Peebles <PEEBLES@yaffa.freeserve.co.uk>
- Wednesday, July 21, 1999 at 20:17:59 (CDT)
Our son Nick just had his second liver biopsy. We are 2 years out from diagnosis. We have been on Galzin. The previous Dr. was talking liver transplant and we were asymptomatic so we did some calling around and got a different Dr. The new one felt our son had stabilized and was not getting any better maybe even a little worse so he changed him to Penecillamine (which he had never tried) after the second biopsy. So far so good, we have been on it 2 weeks and no problems. Now the struggle just continues trying to remember to take it the right times 4x a day on top of two other meds he takes with the meals 2x a day. We did find a Casio brand watch that has a timer one can set to alarm 5x a day. Good luck to all. Becky
Becky Pitre <okla4all@aol.com>
- Monday, July 19, 1999 at 01:45:26 (CDT)
i was diagnosed with wilson's disease in november 1992 - i spent the week of thanksgiving in the hospital - my parents snuck me out of the hospital for our thanksgiving feast - however - how could i appreciate it? i was like a zombie. i first noticed symptoms during a law school final - my hand clenched up and wouldn't open during my international law school exam. symptoms were neurological after that; no liver problems, thank goodness! however, that was in december and i wasn't diagnosed until the following november - thanks to a very astute doctor with a colleague with the movement disorder group at columbia presbyterian, i received immediate treatment; i however am one of the few people who is allergic to penacillamine - syprine is my drug of choice - well, that's my story - i graduated from law school in 1995 and passed the bar the same year - i'm one of the lucky ones...
Leisa Hazard <none- i'm just borrowing a machine>
- Thursday, July 15, 1999 at 19:55:13 (CDT)
I was diagnosed with Wilson's disease less than a month ago, and am so happy to find this guestbook, and the addresses of other people with wilson's. I have felt so alone, because not only does nobody have it that I know, nobody has even heard of it. I started my treatment program in June, and thankfully have not yet had any side effects. As a result of the wilson's, I also have cirrohsis of the liver, with only 20% of my liver functioning. I look forward to hearing from anyone who would like to share their experiences with Wilson's with me.
Martha Anderson <torlak4618@yahoo.com>
- Sunday, July 11, 1999 at 18:25:32 (CDT)
Just to inform that my e-mail changed to veronicamb@uol.com.br Meu novo e-mail é veronicamb@.com.br I am 20 years old WD patient. I live in Rio de Janeiro, Brazil. Feel free to contact me. Tenho 20 anos e sou portadora da doença de Wilson. Moro no Rio de Janeiro. Se quiser entrar em contato, fique à vontade. Veronica Barros
Veronica de Mello Barros <veronicamb@uol.com.br>
- Friday, June 18, 1999 at 23:43:16 (CDT)
Just to inform that my e-mail changed to veronicamb@uol.com.br Meu novo e-mail é veronicamb@.com.br I am 20 years old WD patient. I live in Rio de Janeiro, Brazil. Feel free to contact me. Tenho 20 anos e sou portadora da doença de Wilson. Moro no Rio de Janeiro. Se quiser entrar em contato, fique à vontade. Veronica Barros
Veronica de Mello Barros <veronicamb@uol.com.br>
- Friday, June 18, 1999 at 23:42:45 (CDT)
Hi, I was diagnosed with WD in 1966. I was on penicillamine for 20 years. I started to see Dr. George Brewer, at The University of Michigan in Ann Arbor in 1986, & he started me on Zinc Acetate(Galzin). I feel very fortunate because other than my speech(which is a little fast), I have no other effects from WD. Now I am 52 years old, retired and I have a very good life.---I can't smell skunks either. George(from Canada)
George <georgefeldmann@home.com>
- Friday, June 11, 1999 at 14:02:05 (CDT)
I am eager to seek medical aid through Internet with a very urgent heart, because my daughter (16 years old) was diagnosed as contrating hepatolenticular degeneration (Wilson's disease) and is suffering severely from this lingering illness. I hope that my daughter can recover her health as soon as possible. Now I introduce my daughter's illness in the following: My daughter had abdominal pain with fever, microscopic hematuria without clear inducing cause in July 1998, was diagnosed as having acute glomerulonephritis by First Affiliated Hospital of China Medical University. Her abdominal pain and fever disappeared after one month hospitalization, but her erythrocytes appeared from 1/4 to 2/4 under visual field, protein (+), renal function examination is normal. She took orally Chinese medicine for treatment after hospitalization, but had not remission on microscopic hematuria. She had saying word not clearly, using great efforts to walk, and hypermyotomia of extremities and decline of academic record in near half year. She went to neurological department of China Medical University Second Affiliated Hospital for diagnosis on May 12, 1999. MRI examination for her showed metabolic changes, ophalmic examination showed K-F circules (++++). Her blood ceruloplasmin reduced, she was diagnosed to ill with hepatolenticular degeneration. Ultrosonic results on May 17, 1999: Intra-hepatic echo changes and spleen enlargement are comformed to chronic hepatic damage, early liver cirrhosis can't be excepted. We were informed that there are no good treatment methods except to take penicillamine and low copper diet orally. I led her to other big hospital for treatment, we were told that no better methods to treat this disease. I feel bad in my heart to face this status. My daughter is only 16 years old. She is just in the age of flower season and in the age to study hard and acquire knowledge. She is in grade 2 in middle school. Her academic record is very well. She is eager to learn more knowledge. She originally should live free from care as other same age girls, but she has no choice but to bear torments of the illness. So I want to seek medical aid with some hopes Internet. If you are a doctor or know which hospital can cure this kind of disease, or can provide good treatment scheme, would please stretch out a hand of aid for my daughter, provide information regarding this disease as soon as possible, help my daughter to conquer this serious illness. Our whole family would appreciate your great help through our life. One mother need urgent medical aid: Zhu Limin
Hanpeng <Hanpeng@ihw.com.cn>
- Saturday, June 05, 1999 at 09:57:36 (CDT)
I am eager to seek medical aid through Internet with a very urgent heart, because my daughter (16 years old) was diagnosed as contrating hepatolenticular degeneration (Wilson's disease) and is suffering severely from this lingering illness. I hope that my daughter can recover her health as soon as possible. Now I introduce my daughter's illness in the following: My daughter had abdominal pain with fever, microscopic hematuria without clear inducing cause in July 1998, was diagnosed as having acute glomerulonephritis by First Affiliated Hospital of China Medical University. Her abdominal pain and fever disappeared after one month hospitalization, but her erythrocytes appeared from 1/4 to 2/4 under visual field, protein (+), renal function examination is normal. She took orally Chinese medicine for treatment after hospitalization, but had not remission on microscopic hematuria. She had saying word not clearly, using great efforts to walk, and hypermyotomia of extremities and decline of academic record in near half year. She went to neurological department of China Medical University Second Affiliated Hospital for diagnosis on May 12, 1999. MRI examination for her showed metabolic changes, ophalmic examination showed K-F circules (++++). Her blood ceruloplasmin reduced, she was diagnosed to ill with hepatolenticular degeneration. Ultrosonic results on May 17, 1999: Intra-hepatic echo changes and spleen enlargement are comformed to chronic hepatic damage, early liver cirrhosis can't be excepted. Report of liver function test: We were informed that there are no good treatment methods except to take penicillamine and low copper diet orally. I led her to other big hospital for treatment, we were told that no better methods to treat this disease. I feel bad in my heart to face this status. My daughter is only 16 years old. She is just in the age of flower season and in the age to study hard and acquire knowledge. She is in grade 2 in middle school. Her academic record is very well. She is eager to learn more knowledge. She originally should live free from care as other same age girls, but she has no choice but to bear torments of the illness. So I want to seek medical aid with some hopes Internet. If you are a doctor or know which hospital can cure this kind of disease, or can provide good treatment scheme, would please stretch out a hand of aid for my daughter, provide information regarding this disease as soon as possible, help my daughter to conquer this serious illness. Our whole family would appreciate your great help through our life. One mother need urgent medical aid: Zhu Limin
Hanpeng <Hanpeng@ihw.com.cn>
- Saturday, June 05, 1999 at 09:55:37 (CDT)
Hi,at this time my doctor is still not to sure what excatly I may have,I don't have any symptoms other than when they ran a battery of blood test the copper one was high,I am going in for my biopsy on 06/17/99 Im somewhat concerned and yes nervous of what the outcome may be. If there is anybody that was in a situation similar to mine, with no symtoms, and can tell me more of what to expect, and if there is any side affects with the treatments or medicne I would greatly appreciate it. My e-mail is siezz@aol.com, thank you.
Cesar Perez <siezz@aol.com>
- Friday, June 04, 1999 at 00:30:44 (CDT)
I had a sister who died from WD when she was 9. I was born one year later. My brother is 7 years older than me. He was diagnosed with WD when he was 17. I was tested and do not have it. It's a very painful legacy that has been carried through my family. I am so glad to have found this site, to learn that I am not alone.
Mary Moffitt <tripplem@earthlink.net>
- Wednesday, May 26, 1999 at 17:04:51 (CDT)
Anyone interested in speaking with a freind of mine who knows no-one with this disease other than himself, he just went through a liver transplant. He has a great outlook on life, but, by my being his freind I can see his frustration by not knowing anyone who has really gone through his ordeal. If anyone is interested please E-mail me with your address and I will give it to him to write. Or you can write him at: Raymond Beckett, P.O. Box 272, Pevely, MO 63070. I would love to see him be with people like himself so that he can identify his feelings and frustrations with someone who can truly understand. I care about my friend very much.
Tonya R. Swan <wunderlich@1main.net>
- Monday, May 24, 1999 at 14:13:17 (CDT)
my partner was diagnosed with wilsons approx 10 years ago. he has had three liver transplants since, and is still fighting on for a good quality of life. we have a son who will be three next month. life is good, most days, and there is hope and treatment for those who are diagnosed with wilsons today that doesnot always involve tansplantation. good luck.
janice c
- Monday, May 24, 1999 at 05:14:07 (CDT)
I am so glad to have found this site. I have wondered how a person can have doctors (that know nothing about WD) treat so many different ailments and still not make one feel better. By reading your entries, I feel very fortunate that I haven't had near the "GP" work done to me as what I thought. Thanks for letting me be a guest.
Carol Dyke <hrsepucky@hotmail.com>
- Friday, May 21, 1999 at 14:45:56 (CDT)
bikeing is cool
george the man
- Tuesday, April 20, 1999 at 13:17:23 (CDT)
WOW!!. This sight is great!. Thank You Javier for sharing it with me. I was diagnosed with Hepatic WD in 1980, developed fully blown NWD 1993/1994. I would like to offer "My Story". I am glad there are people with 3 pages of text. I am an Author, I can never cut a long story short. I have 2 Website that show the cover of my book, www.geocites.com./Hollywood/Hills/2075, and Dr Robert Stall MD Homepage Thank You Susan Western Australia
Susan Kuiper <SKUIPER@BIGPOND.COM>
- Friday, April 09, 1999 at 00:18:47 (CDT)
HI, MY NAME IS CHRIS, AND I WAS RECENTLY DIAGNOSED WITH WD. MY CASE WAS VERY LIFE THREATNING. I HAD CAUGHT MONO THE WEEK BEFORE AND IT JUST PUSHED EVRYTHING ALONG, VERY QUICKLY. WITHIN 2 WEEKS OF CATCHING MONO I WAS IN BOSTON CHILDRENS HOSPITAL, ON THE VERGE OF DEATH. I WAS BROUGHT TO BOSTON BY AIR. THE PAIN WAS SO UNBEARABLE. I AM ONLY 15 AND I THOUGHT FOR SURE IT WAS A BAD NIGHTMARE. I WAS IN DESPRATE NEED OF A LIVER TRANSPLANT, I WAS IMEDEATLY PLASED #1 ON THE LIST OF OVER 11,000 PEOPLE WAITHING FOR A LIVER. WITHIN 11 DAYS OF MY PLASEMENT I WAS IN THE OR, SCARED TO DEATH. AFTER SPENDING 2 1/2 MONTHS IN THE HOSPITAL I RETURNED TO MY HOME IN VERMONT. I AM NOW CURED, AND DOING WELL. AT THE MOMENT I TAKE A LARGE AMOUNT OF PILLS, BUT IT BEATS THE ALTERNATIVE. SO I WISH EVERYONE THAT HAS THIS, OR KNOWS SOMEONE WITH IT, ALL THE BEST. MY WORDS OF ADVISE...NEVER GIVE UP TH FIGHT!! +*+CHRIS+*+
chris <ROXIE_51@HOTMAIL.COM>
- Thursday, April 01, 1999 at 17:17:50 (CST)
I found this site for the first time tonite at a late hour but had to read all of it. Wow! I entered our son Nick's history and have found from reading all the others we were very lucky to find it as early as we did. Any advice on reminding him to take his Zinc 3 times a day without sounding pushy. Overall he does extremely well. Anyone from California out there? Thanks so much for sharing and giving us a chance to share and see we are not the only ones and one can live a long normal life with Wilson's if one takes care of one self.
Becky Pitre <okla4all@aol.com>
- Monday, March 29, 1999 at 03:44:17 (CST)
Hi! My wife, Marla, has WD. Is anyone familiar with the usage of the herb Milk Thistle in regards to WD? It, Milk Thistle, is supposed to be very therapeutic for rejuvenating the liver regarding people with cirrosis, hepatitis, and such. Of course one would go on with one's regular medication... but i wonder if Milk Thistle could be used additionally. We are going to ask Marla's specialist during her next visit. Warm regards, Tom
Thomas Pietruszka <104610.3616@compuserve.com>
- Monday, March 22, 1999 at 19:45:26 (CST)
Be positive and excersize to get back to good health. To help with my tremors I needled pointed ( made Christmas presents that year by doing it too.
Gerald J Fortuna <Gerry42NA@aol.com>
- Thursday, March 11, 1999 at 19:10:02 (CST)
I'm writing for Michael who is currently in a neurological ICU unit. On returning from U of Michigan Hospital, he came down with pneumonia. He also has severe distonia and a great deal of pain. Any words of encouragement or ideas for pain relief would be very much appreciated. Thanks. Michael's Aunt Natalie
Michael <gironside@wave.home.com>
- Thursday, March 04, 1999 at 19:50:16 (CST)
I was diagnosed with MD three years ag in my early twenties. It took the doctors quite a long time to figure out which disease I'm suffering from, so there is some damage which is unreparable (I still can`t use my hands properly, my speech is slow etc.). When the symptoms first started i thought i was going insane. Even sharing my problems with people i knew didn't help. When i consulted a physician he told me i was suffering from mental problems, having a vivid imagination. If someone had known about the disease before, for example via your webpage I would propably feel much better now. I am taking trientine know, being allergic to both penicillamin an zinc. I developed some rheumatic problems and a lupos under this treatment though. Is there anybody with the same problem? I would glad about a contact. Strenght and love Mieke
Mieke Roscher <mroscher@uni-bremem.de>
- Wednesday, March 03, 1999 at 09:16:34 (CST)
I was diagnosed with MD three years ag in my early twenties. It took the doctors quite a long time to figure out which disease I'm suffering from, so there is some damage which is unreparable (I still can`t use my hands properly, my speech is slow etc.). When the symptoms first started i thought i was going insane. Even sharing my problems with people i knew didn't help. When i consulted a physician he told me i was suffering from mental problems, having a vivid imagination. If someone had known about the disease before, for example via your webpage I would propably feel much better now. I am taking trientine know, being allergic to both penicillamin an zinc. I developed some rheumatic problems and a lupos under this treatment though. Is there anybody with the same problem? I would glad about a contact. Strenght and love Mieke
Mieke Roscher <mroscher@uni-bremem.de>
- Wednesday, March 03, 1999 at 09:16:03 (CST)
Hi from Montana Sure glad I've found this site and to know I have a place to visit with more WD patients. Thanks
C J Dyke <horsepucky@hotmail.com>
- Monday, March 01, 1999 at 21:02:35 (CST)
I would just like to say that my prayers are with you always and i am just thankful to be alive right now, and I feel for you people that have this disease. I read up on it because it is a report that is due in my biology class, but usually reports are boring, but this one touches me and I think it will be my best one yet. God Bless you all.
Leslie Owen <PEACH4EVER@AOL.COM>
- Thursday, February 11, 1999 at 02:03:11 (CST)
I currently have 2 children diagnosed with WD and having my third child tested. I'm thankful for these web sites. To learn more about this disease and we're not alone. Luv you Darla....
Debby Gardner-Byer <fritzv.volcano.net>
- Tuesday, February 02, 1999 at 17:19:34 (CST)
W ILSONS DIAG. 6-98 ZINC/ARTINE FOR DYSTONIA
NIKOLE RUPP <CMDROO>
- Sunday, January 24, 1999 at 13:11:57 (CST)
ll
ll <ll@ll.com>
- Monday, January 04, 1999 at 20:21:43 (CST)

I was diagnosed with WD in midyear of 1970. The disease had started to manifest itself while I was serving Vietnam in '68 & 69', first with tremors and than detiorating handwriting. When I returned to the U.S. the doctors said it was common to have nervous bouts after being in a combat situation for a year. I went to work in retail sales but my condition was detiorating to the point that my speech became incoherent and body became extremely rigid and tremerous Finally the VA was going to admit me to the Psych Ward. While I was waiting, with my mother insisting I was't crazy, a resident stopped and looked at my eyes. One glance and he said, "this man has WD". Every one else had missed the KF rings. I was put on penacillamine and told I would be back to normal in as little as 3 months. But the damage had been done. My symtoms now are like a stroke victim. I've had many complications including a massive esophageal bleedout, which to their amazement I sur survived(splenorenal shunt). Through my own physical therapy (running and weight lifting-bench pressed 315lbs) I appear perfectly normal although I have chronic active hepatitis non A non B, cirrhosis, nephrotic sydrome, two heart murmurs, and the onset of arthritis. My speech is the dead giveaway. I control my tremors with diazapem as needed. I haven't worked since 1970 because I'm unable to write legibly and speak clearly. I have a degree in psychology. I stay busy doing housework(married with 2 children(grownup now) and volunteer work -7 years gymnasics and ten years High School swim coach(my daughter was a national swimmer and did her undergrad work on an atheletic scholarship- she's getting her Masters on an academic scholarship and paid stiped ) My wife is a school teacher and looking forward to retirement in three years. My hobbies are sports, ballroom dancing, traveling, and camping. My families positive attitude, especially my wife does not allow me to feel sorry for myself. Like I tell my swimmers, "can't is a four letter word". Richard S. Smith p.s. My daughter informed me of this web site Richard S. Smith - Wednesday, October 28, 1998 at 20:59:36 (CST)
I'm glad I found this. I look forward to corresponding with some of you. It's a great site! See my History.
David Hardegree <dhardegree@lucent.com>
- Friday, October 09, 1998 at 15:19:25 (CDT)
This is a good sight!!! I had a friend who almost died from WD a couple years ago. Thankfully they found a liver donor in time though.
Angela Gillham <all4music@hotmail.com>
- Monday, October 05, 1998 at 00:39:58 (CDT)
I'm a nursing student doing a report on Wilson's disease. Thanks for the great info. Lisa
Lisa VanHorn
- Thursday, September 24, 1998 at 13:13:33 (CDT)
This appears to be a young person's disease. Are there exceptions in which the disease appears later in life.
Linda C. Zeigler <lindaczeigler@home.net>
- Tuesday, September 15, 1998 at 11:38:39 (CDT)
Thanks Erik, my twenty-seven year old daughter has WD and is doing great on ZincAcetate . Its great to be able to read the Histories as its so rare.
Sue Blackburn <swig@tco.net>
- Thursday, September 03, 1998 at 18:47:08 (CDT)
Dear Erik Thank you for your web site initiative. My wife has been diagnosed with WD for nearly 10 years now. We are active in the Danish WD Association and are going to spread the news about this site to the other members.
Niels Bent Johansen <nbtj@post3.tele.dk>
- Sunday, August 30, 1998 at 16:10:11 (CDT)
Can someone give provide a food chart or cheat sheet for foods to be eaten? Enjoyed all the histories and updates.
louise johnson <louisejohnson@suson.subr.edu>
- Tuesday, August 25, 1998 at 13:36:47 (CDT)
Sou brasileira, moro no Rio de Janeiro, tenho 20 anos e sou portadora da doença de Wilson. Se você quiser entrar em contato comigo ou saber informações sobre a associação Brasileira da Doença de Wilson ligue para mim nos telefones: (021) 511-2486; (024) 522-6523;(024)522-8973; fax(024) 522-6112. meus e-mails são: e . beijos, Verônica de Mello Barros
Verônica de Mello Barros <fjrbarr@ibm.net>
- Friday, August 07, 1998 at 15:12:27 (CDT)
Can anyone recommend an expert in Wilson's Disease in Boston. Would this person see an almost 14 year old. Would like to avoid pediatric G.I. specialists as they see very little Wilson's Disease. Thank you
Marian H. Putnam, M.D. <mputnam@user1.channel1.com>
- Wednesday, July 22, 1998 at 08:24:10 (CDT)
Dear Erik, My son, Carl is 24. He was diagnosed with Wilson's Disease in 1997, January. Since he has taken Cuprimine, he has improved considerably. I have read the histories and think he is very lucky. He mainly had psychiatric symptoms, but I can see he also had the stiffness and other symptoms I was not aware of. Thank you so much for your Web site! Thank you, thank you, thank you. I may submit his if he so desires.
Dottie Baumgartner <BAUMTRUCK@aol.com>
- Tuesday, July 21, 1998 at 18:22:20 (CDT)
I wish I had looked for WD online a year ago. My husband has known he has WD since 1958 & lost a brother & sister to it and has 3other siblings alive with it. My husband is now admitted to Mass General with complications & we may be facing liver transplant surgery. I think if I had read some of your case histories earlier I would have been alarmed at the leg cramps & other seemingly benign symptoms he has had recently. He has been asymptomatic his whole life till now & we never expected him to deteriorate as quickly as he has the last 6 months. I will be spending many hours over the next few weeks reading all websites I can find on WD and liver transplants.
Janice Sawyer <Jes54>
- Tuesday, June 23, 1998 at 21:01:39 (CDT)
This is a great website. Thank you, Erik. I'll submit my brother's story (he has WD for 18 yrs) as soon as I finish it.
Meilan Chen <h635@aol.com>
- Tuesday, June 09, 1998 at 21:54:26 (CDT)
What a great web site. My wife Joan has WD and because it is so rare it is hard to find a a support group to share with. We will be sending you our story to add to your web page.
Dennis G. & Joan R. Majewski <majewski@netnet.net>
- Sunday, June 07, 1998 at 14:44:52 (CDT)
My daughter was recently diagnosed with WD and is being treated with penicillamine. I plan on visiting and/or contributing to this site often. Thankk You. Jeff Ferketic
Jeff Ferketic <ferketi@hsd.utc.com>
- Friday, May 22, 1998 at 13:18:35 (CDT)
Wow!
Niko <glasspants@aol.com>
- Monday, May 18, 1998 at 01:11:19 (CDT)
What a great website! I have a new friend who has WD and has experienced some rather severe effects from the disease. She can barely, and then only a few words in a very light voice. She also hasother symptoms that are typical in WD cases, yet she has the most amazing spirit of nearly anyone I've ever met. I want to introduce her to this site and the internet when she gets a computer. She's looking forward to it.
Steve Townsley <mrsunshine@fishnet.net>
- Tuesday, May 12, 1998 at 03:53:32 (CDT)
Erik, This is a great idea. Keep up the great work.
Michelle Moulton <moulton@gsosun1.gso.uri.edu>
- Monday, May 11, 1998 at 15:20:40 (CDT)
Thank you Erick!! This site is really GOOD!
Verônica de Mello Barros <fjrbarr@ibm.net>
- Saturday, May 09, 1998 at 21:23:42 (CDT)
Eric great idea! This should be helpful to everyone with WD.
Valerie Rogers <PINEHURSTT@aol.com>
- Saturday, May 09, 1998 at 16:49:54 (CDT)
medical colours...I feel like I am in the waiting room already...smell the disease. looks like everything works..good luck.
James Cole <don't@botherme.com>
- Saturday, May 09, 1998 at 13:45:38 (CDT)
Hi, Erik. Great Website, I'm impressed.
Markus Sander <markus@palm.link-r.de>
- Saturday, May 09, 1998 at 04:36:41 (CDT)
Just checking to make sure the guestbook works. I gotta go find a 1998 penney to scan and the site (minus the FAQ) will be complete.
Erik Mattheis <grmndzr@isd.net>
- Friday, May 08, 1998 at 15:36:37 (CDT)