Hi, I was diagnosed with Degos disease about 2 and a half years ago. 

I first noticed a sore on my arm that wouldn’t heal. I went to my regular doctor who then referred me to a dermatologist. After several biopsies of the sore on my arm, and other spots on my legs, the diagnosis came back as Degos disease.

I’ve had lots of testing since (including a colonoscopy and very thorough eye exam) and so far have no systemic involvement. Only a few new lesions have appeared on my legs since. My sons, brothers and I are all participating in the genetic testing.

Currently, the only medication I’m taking is a baby aspirin each day. I’m very interested in the research on the nicotine patch and would be willing to try that as a treatment. I’m hoping the research being done will provide a cause, other treatments, and possibly a cure in the future.

I would like to give a big thank you Judith for all her work on our behalf. Also another big thanks to all of the researchers in Germany. Keep in touch everyone.

Susan, USA