Tana Kipp: My experience with Degos
I’m a 27-year-old woman who noticed a spot on my leg in May 2000. After seeing another lesion on my forearm in October, I decided to visit a doctor to find out what they were. They are strange little spots-not too ugly, not really bothering me, just peculiar. The dermatologist I visited in Fridley, Minnesota diagnosed me with Degos Disease after looking at a biopsy of the lesion on my leg. I’ve been to various dermatologists and hematologists at the University of Minnesota Fairview Medical Center and had a variety of blood work done to rule out other diseases (like lupus) and to see what my blood is doing. According to the tests, my blood doesn’t seem to be doing anything out of the ordinary. The dermatologists believe my biopsy looks so similar to Degos that they are sticking with the original diagnosis. I have not developed any new lesions since October 2000.
Currently, I am taking 80 mg of aspirin a day. My doctors all seem to feel that until more lesions or symptoms appear, I should hold off on other treatments. I don’t like to take a lot of medicine (I already take medicine every day for allergies/asthma), so I like this approach, but at the same time I’m worried that I’m leaving my body open to more problems in the future.
I’m frustrated with the lack of information on why people develop Degos and what effectively treats the symptoms, but I also think I’m lucky that physically I feel very good. It’s important for me to concentrate on that and appreciate what I do have in my life. Since so little is known about Degos, in some ways I think it allows me to feel more positive than another diagnosis might. No one can say for certain how this will progress, so I’ll hope for the best. As for what will come in the future, it’s clear to me that I need to be thankful for what I do have in life at this moment. I think few people take the time to do that and when they suddenly become ill they feel cheated.
It’s a bit confusing to have a disease that you have to explain to doctors, and I think it reinforces the idea that we must be proactive patients who seek out helpful information and take each doctor’s opinion with a grain of salt. I don’t regularly see any specific doctor after those first 18 months where I had a doctor’s appointment each month (dermatologist, hematologist, general family practice, gynecologist for the reproductive aspects/questions, and genetic counselor). Each doctor seems at a loss because of the lack of information and treatment options, and I feel like they would rather I leave them alone since they can’t “fix” me. I feel comfortable with the general family practice doctor and he is probably the first person I would go to if I develop new lesions or other symptoms.