Deanna Jenkins USA
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 the blood draws every month, to being put on aspirin 1-a-day to thin my blood.
My diagnosis at the time was that most people with the disease, and there was only 60 known cases in the world at the time, was that most people lived about two years with the condition and then they experienced either the intestinal or the brain lesion complictions and death.
At the age of twelve 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 exploritory surgery to find this and correct it. Upon examination of my internal organs it was noted that I was covered with lesions internaly as well as externally.
After two years with no furthur complications my Mom quit counting lesions and I quit taking aspirin. I am 37 years old, have given birth to two children now 15 and 13, live a normal life without constant visits to the doctor.
Two years ago I had a doctor who wanted to start monitoring me as aging can have an effect on all sorts of body functions and he felt just to be on the safe side we should be on top of my general health. He unfortunatly 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 as I have had it for at least 26 years and as of yet I have lived a wonderfull life. I am as all of Degos patients seeking answers and have questions. Please feel free to email me with any questions or comments.
Until we find our answers
Deanna