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.

14 Members

11 Posts

0 Online

deleted_user 03/30/2008

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?

deleted_user 04/10/2008

try this web site http://www.wilsonsdisease.org/ they have centers of excellence sites throughout the USA. if that does not help call
Kimberly F. Symonds
Executive Director
Wilson's Disease Association
1802 Brookside Drive
Wooster, Ohio 44691
330-264-1450
888-264-1450
good luck

daisydduck 05/06/2008

ask about the slit lamp test..must be done by opthomologist. They can see a copper ring around the iris if it's positive...was told this is the best way to diagnose

Join the Conversation