I first became aware that I had lesions (about 2 or 3) when I was about 5 years old and before being diagnosed in 1991. 

In 1991, I had an “outbreak” of probably 30 or more lesions in varying sizes and conditions. All were itchy but not all had the white centers (mostly only the bigger ones). 

At the time I had the outbreak, I had some very stressful things going on in my life. (I still am not sure if that contributed to my outbreak.)

My dermatologist in Salem, Oregon did a biopsy that he sent to the Oregon Health Sciences University (OHSU). 

He told me he thought it was Degos disease but wasn’t sure. 

OHSU later confirmed his diagnosis. 

I was devastated after doing my own research at the OHSU library to find out it was also considered “malignant” atrophic papulosis. 

Based on my readings at the time, I was at a high risk of imminent death, i.e I read that a high percentage of males die within five years of diagnosis.

My doctor referred me to the Mayo Clinic. There I met the head of dermatology whose articles I had also read in the medical journals. 

His first comment to me was: “You’ve read my reports. You know there’s nothing I can do for you so why are you here?” How very nice of him! (and no he wasn’t trying to be funny!) 

I told him I had hoped, that since he wrote the articles, (as they were 10 years old at least) that there was new Degos disease research, and that I wanted him to discover whether or not I really have Degos disease.

Well three days and $5,000 later, he basically told me: “Yes you have Degos disease. No, there’s nothing we can do for you.” 

He did recommend that I take Persantine, which I did until the prescription ran out because 

I heard that Aspirin did about the same thing e.g. make my platelets more slippery. 

Since that time I have had much fewer lesions…maybe 1-3 a year…and they are all pretty small. I have had anymore tests for Degos disease since that time.

After talking to others “in the same boat” (like Judith), it has been surmised that I may have a “benign” form of the disease. 

I’m interested in hearing from others (particularly those who went to the conference in Berlin in March 2005, if there is any truth to the possibility of a benign form of the disease).

My blessings and prayers to everyone who has this potentially devastating disease.

Roger