Debby from Madison, Wisconsin, USA

DebbyHello, I am from Madison, Wisconsin and I had been diagnosed with Degos about seven years ago and have been a friend on this site ever since. After several doctors, including specialist, many tests and biopsies, and then trials of blood thinners and aspirin, I continued to develop new spots all over my body, including the bottom of my feet (which doctors once thought was immune from this disease). Only one doctor (local doctor) knew of this disease, until I went to Mayo Clinic-then, yes, the doctors there have heard of it, but had no more information than I already received from my own research. I ended up with thousands of ugly spots, mostly stomach, back, and legs. Now, however, after stopping all test meds for over three months, my spots on my tummy and back have disappeared! Many on my legs have faded. My dermatologist, the one familiar with this disease, said the disappearance was more rare than this rare disease itself! Of course, nobody knows why.

I had the fortune of being able to attend the one and only US Conference on Degos in Boston. It was fabulous meeting fellow Degos patients, including Judith! However, the conference didn’t offer much in explanations or future hope, except that the word is out there!

I am very happy to have contact with other patients, if you would like to email me or post to our site. My email is: drbushey@wisc.edu.

Debby