Wilson's Disease Support Group

In Wilson's disease (or hepatolenticular degeneration), copper isn't eliminated properly and instead accumulates, possibly to a life-threatening level. Symptoms typically begin between the ages of 12 and 23. This is the group for you if you or someone you know is suffering from WilsonÕs disease.

0 Online
  • My daughter has to interview someone who has Wilson's disease for Biology. Would anyone be willing to allow her to email you and ask the questions and you just answer and email her back? The questions will be something like when were you first diagnosed. And how has this disease affected your life.Please let me know if anyone is willing to do this. Thanks.She has a genetic disorder as well...
  • jsunshine88

    Recipes/Diet for Wilson's Disease

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    I have a young niece, she's starting her freshman year of high school I believe, who has been diagnosed a few years ago with Wilson's Disease (she's one of the youngest diagnosed I believe the doctors said). She is having trouble with the diet. I've searched for recipes on google, but figured maybe it's better to ask people who have to cook this way on a regular basis but I don't know anyone and...
  • lina00

    Medicine needed

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    Hi dear,My sister in-law have wilson disease and sadly her medicine is no longer available in the ME , she used to take Artamin 250mg for 25 years.Please we checked everywhere in the middle east and disparate to find her substitute cuprimine or depen.Money is not an issue it is just the medicine we cant find and we know it is important with every passing day.Thank you Lina
  • deleted_user

    wilsons disease

    would anyone be ableto tell me if a liver biopsy is the way to get a true diagnosis?
  • deleted_user

    Possible Wilson Disease

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    Hi Everyone,I hope someone can give me some more info...at the moment my head is spinning with lots of info from different websites.I have been suffering (for years) with on and off lower back pain. The current episode has been going for over 2 weeks now. I came to the conclusion yesterday that it cold be due to my IUD which I had fitted over 8 years ago. I have always had heavy menstrual...
  • deleted_user

    Does it really sound like I have wilson's disease?

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    For my entire life I have been riddled with problems and I was pretty much just dealing with them. Diagnosed with tourettes at 11 and then later Sensory processing disorder (and possibly Aspergers) at age 24/25. I have been stiff and in pain soon after I was born. I would like to hear from other people with Wilson's (or medical professionals)...I was going for genetics testing to see if I had...
  • deleted_user

    some help

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    i think i might have wilsons diease ? ok . some hair that used to be red is now dark brown . i have constant leg pain and sometimes can barely move them . musclar twitching . i have had a eeg - no seizures . emg in my legs no nerve damage . no dystonia . no ms. and my systoms i just realized from my gf get worse when i eat choclate .
  • deleted_user

    Pain

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    Do you experience pain on the right side of your abdomen??
  • deleted_user

    what's the process of getting diagnosed

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    I am having trouble getting a doctor to give a diagnosis. We have had nine tests which consisted of blood work and 24hr urine copper test. I have yet to find a doctor to do a liver biopsy. I hear this is the only true way of knowing?