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About this Site

Note from Webmaster 4/6/2002

The Wilson's Disease Patient Information Exchange has not been updated in a number of years. Some links may be dead, the forms don't work and some information may not be timely.

This site was one of the first I made - in early 1997 I believe. At that time, I scoured the Internet for information about the disease and am happy this site currently gets a lot of use out of others like me and their families. I hope to soon update it and get everything working, but in the mean time, please accept apology: the treatment of my disorder was so successful, I went from someone on permanent disability to someone too busy with his own Internet business to update a labor of love. Most days, the thought that I have Wilson's Disease doesn't enter my mind except for the few seconds before and after I take my zinc - an act so routine, I probably don't associate it with a disease most of the time.

I have several dozen patient histories to add, and if you're one of the people who have tried to submit a form here and got an error, I really apologize.

If you're interested in what I'm doing now, I'm an independent contractor (warning: some links there are racy in a PG-13 kind of way) specializing in complex Flash gizmos and data driven websites. I also do websites for smaller concerns, such as this one about early childhood reading.

I mainly wanted to apologize for not having updated the site in so long and give people realistic hope that their recovery might be as complete as mine.

- Erik Mattheis

Wilson's Disease Patient Information Exchange

These pages provide Wilson's Disease patients and their families a forum to share and compare their symptoms, treatments and to tell how the disease has affected their lives.

Wilson's Disease chat. [chat help and schedule]

Wilson's Disease is a rare genetic disorder which prevents the body from properly excreting copper. Over a period of many years, copper accumulates in the body and may cause serious problems from copper poisoning. An estimated one in 30,000 people suffers from Wilson's Disease.

In about half of Wilson's Disease patients, the liver is the only affected organ, the rest of us experience damage to both the liver and nervous system. Patients can experience all sorts of neurological or psychiatric problems. The disease may mimic Parkinson's Disease, and schizophrenia; many patients are misdiagnosed for years before Wilson's Disease is discovered.

If you are looking for in-depth information concerning the symptomology and treatment of Wilson's Disease, please visit the Wilson's Disease Association website. The Wilson's Disease Discussion Group mailing list is also a great resource for those interested in the disease.

If you are not a member of the Wilson's Disease Association, you are strongly encouraged to join. The WDA heightens awareness of the disease, and sends out a regular newsletter to members.