Debby from Madison, Wisconsin, USA
Hello, 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: firstname.lastname@example.org.
Update to my story
Hi all–I have just come back from the National Institute of Health in Bethesda, MD after a week long stay of tests, including blood work-ups, C-scans, PET scans, ultrasounds, pictures, biopsy, etc. I’m so very happy that this institute has taken an interest in Degos and is doing this very important study. Dr. Manfred Boehm is fantastic and leads up this study. His staff is the most kind-hearted and friendly people and I’m so happy I met them all and spent a week with them. I met many doctors in all fields of study that have taken an interest in this disease at the NIH. If anybody else would be interested in participating in this study, please contact me and I’ll hook you up with Dr. Boehm. Hey, I even got to look at my cells from the biopsy through a micro-scope and also viewed them split and cloned! So very interesting and to see the excitement and interest that Dr. Boehm has in this study was so worthwhile!
It is very hard to find a degos spot on my body anymore as thankfully they have all faded or gone away. I had them for ten years before this happened however. I’ve heard from fellow degos patients who have also had this disappearance of spots after years with the disease. I have also heard from patients who have not been as lucky as me and who are dealing with the horrible disease systemically.
I want to thank Judith, for deciding to once again take care of our website and for all the work she has dedicated to this site, just to help all of us! Love you Judith! Debby