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 WilsonÃ•s disease.

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deleted_user 03/29/2008

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

deleted_user 09/04/2008

HI There.
I think at present there are a few ways to get true diagnosis.
1. Liver Biopsy
2. Lumbar Puncture.
3. Brown Rings around the Eyes which is a copper biuld up.
Hope this is of use to you.
All the best.
Ultan, Ireland

deleted_user 11/23/2008

Yes, a liver biopsy would be the best way to get the diagnosis.

deleted_user 08/07/2009

i am 15 almost 16 and they think i have wilson's disease is that possable ?

daisydduck 10/18/2009

awicker, my gs was tested at 16 but they could not confirm. He is 19 now and being tested again. They are also going to xray his liver. Be thankful you have a doc who is knowledgeable of disease....many just ignore symptons.

deleted_user 05/05/2010

call to Mayo clinic in Minessota. a simple blood test to check for a specific gen will give you a def. answer. That's how my daughter was diagnosed

deleted_user 08/09/2010

I had blood tests and a very sharp minded actively listening physician.
Follow up tests were done too but did not need to get a biopsy.

deleted_user 10/09/2010

Most likely. Blood tests don't show anything.

deleted_user 10/09/2010

Daisy is right. My Dr.'s don't know how to handle Wilson's. I was able to go on the liver diet for a week to clean it out. I felt great for a while, then the cloudy brain appeared again. The ring around my left eye. I've started to studder. I need to go on the diet again. I get fatigued !

deleted_user 10/09/2010

How much is the blood test at Mayo clinic. Do you send away for it?

deleted_user 10/09/2010

I have been living with Wilson's for a long time & didn't know it.......
My Dad was Sicilian and had sea food often for us. Much of it was high in copper. I would get very sick. Very jaundice. I look back with horor of childhood............being punished for getting sick on my food.
Bad memories.

deleted_user 05/21/2013

Hi my daughter is 16 years old and was just diagnosed with Wilson's Disease she has the rings in her eyes and liver biopsy confirmed it and showed liver damage I know little to nothing about this disease and would appreciate anything anyone can tell me about it thank you

daisydduck 05/27/2013

It is genetic and untreated it can be deadly. It attacks liver, kidneys and brain. Diagnosed and treated, survival is good. You do need to watch diet and avoid foods high in copper. My son is not diagnosed yet but is being watched and avoiding foods high in copper.

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