I have had my story here for a long time, so it seems time to update. I have not made any progress with a “fix” for this disease but I have found comfort in having just one doctor now. He treats my symtoms as they arise and I have only gained a few lesions over the last few years. Trentol has helped me. I do see improvement in skin with that. And for aches and pains I am on vioxx. I am not focused on the past so much as the future. It’s been 7 years this month since my diagnosis. And I still survive. I have just been married for five years and hope that my doctors will allow for having a child. Lets hope….
Update following the Degos Conference 2007
Hello everyone. It was a turning point for me to have gone to Boston. I have a true understanding of where my work now needs to be. We all need to look for answers together and not alone.