Verna
Approximately 7 years ago I was diagnosed with Tangier's Disease and I'm trying to locate other victims. Tangier's is a very rare, genetic nerve disease involving cholesterol use in the body. In my case I have nerve damage due to the demilinization process. Both of my hands are seriously affected as are the nerves in my face. I have reduced sensation to hot, cold, pain and touch from the waist up. There are currently several studies nation and worldwide and I'd like to be able to get in touch with those involved in these studies. Because this disease is so rare there are no support groups available and it would be nice to make contact among ourselves.