I was 11 years old in 1979 when I was diagnosed with Degos’ Syndrome. My body had 1000s of lesions. 

My mom quit counting in the 1000s range. 

I was sent to a dermatologist in Spokane, Washington, Dr. Wiwatowski. 

I went through the taking of two lesions for biopsy and blood draws every month, to being put on aspirin, one-a-day to thin my blood.

My diagnosis at the time was that most people with Degos disease, and there was only 60 known cases in the world at the time. 

Most people lived about two years with the condition, and then they experienced either the intestinal or the brain lesion complications and death.

At the age of 12, I experienced a hernia of the intestine caused by a sticky lesion sticking to intestinal skin and forming a loop in which the intestine caught in pinching of its normal function. 

I underwent exploratory surgery to find this and correct it. 

Upon the examination of my internal organs, it was noted that I was covered with lesions internally as well as externally.

After two years with no further complications, my Mom quit counting lesions, and I quit taking aspirin. 

I am 37 years old, have given birth to two children, who are now 15 and 13, and I live a normal life without constant visits to the doctor.

Two years ago, I had a doctor who wanted to start monitoring me, because aging can have an effect on all sorts of body functions, and he felt that just to be on the safe side, we should be on top of my general health. 

Unfortunately, he moved from here, and the other doctors are not really interested in the situation unless they can have some kind of immediate results. 

The same story I keep hearing they don’t understand and cannot do anything so don’t want to deal with me.

I hope to give hope to any of you just starting off with this disease, because I have had it for at least 26 years, and as of yet, I have lived a wonderful life. 

I am, as all of Degos disease patients, seeking answers and have questions. Please feel free to email me with any questions or comments.

Until we find our answers,
Deanna