If you have a story relating to Degos Disease, please send it to us using the contact form.
Judith – First of all thank you for all the work you have done to keep Degos information available to those of us who have had a lot of questions over time.
I gave you my history way back, probably ten years ago and can still report that I have had no problems since I was treated with Plaquenil about 20 years ago. Looking at some of the pictures that you have posted I never had as many lesions as I saw in the pictures. I would say a couple dozen, mostly on my back, chest hands and feet. My wife first noticed them around 1990.
I first noticed a bump on my wrist/hand area approximately 3-1/2 years ago at the age of 22.
I began noticing more of these bumps on my arms/legs/trunk area. I went to the family doctor a few times and he tried a couple of different topical creams with no improvement. From there I was referred to a dermatologist who did bloodwork (all normal excepting titer level) and also a biopsy which came back inconclusive. He thought I possibly had lupus so I was referred to a rheumatologist who did all the necessary testing, etc. and confirmed that I did not have lupus.
Hi, my name is Mary, I live in the Chicago area. I was diagnosed with Degos in 2002. My current medications include 81 mg of aspirin 1 x a day, and 40 mg shot of Lovenox 1 x a day for the Degos, I am currently not symptomatic and have had no new leisons that I am aware of since 2002. Also, the stenoses that was diagnosed in late 2002 in my gut area — Focal stenoses of the celiac trunk, origin of the superior mesenteric artery, and multiple hepatic artery stenosis is no longer detected on my CT angiograms that are preformed every couple of years.
Hi everyone. I was diagnosed yesterday (10th December ’07) with DD. I have yet to have the tests to see if it is benign or systemic. I am married with three beautiful children and I am currently confident that it will remain benign. All the best to everyone with the disease. We must fight hard and believe we can win. I have God in my corner also which will hopefully help. I would gladly welcome any advice from fellow DD sufferers.
Having read so many stories, I thought I should add my own which is, to date at least, a happy one.
I was diagnosed, by the third consultant dermatologist that I saw, with Degos in 1997. They thought it was Lupus at first. I was then aged 39.
Rio Carroll was diagnosed with DD at Birmingham Childrens Hospital, UK in April 2007.
Unfortunately the disease progressed quite rapidly and attacked Rio’s central nervous system and gut quite aggressively.
Rio fought very hard but, at only 8 months old and after enduring so much, he lost his fight for life on 4th May 2007.
My sister, Mary, was diagnosed with Degos Syndrome at birth. Doctors gave her about 2-3 years but fought on until just 2 months before her fourth birthday. I was just a month away from my 7th birthday.
We live in a suburb of Boston and were lucky enough to have some of the greatest health care professionals in the world work on Mary’s diagnosis at Children’s Hospital in Boston. The ones who stick out were the nurses however. My family still gets Christmas cards from them every year after more than 10 years now.
I’m 32 year old black male. I was diagnosed with SLE 11 years ago. Now in 2004 I went to the dermatologist, after noticing white spots and my hand would hurt. Who told me that I had Reynodes Disease, they gave me some creams and sent me home. As they spots began to develop I started getting ulcers, so I went for a second opinion to which a biopsy was done. Which led to an infection where I almost lost my hand. Come to find out it was Degos Disease. I was told about the one case for the nicotene patches, so I’ve been using them and now I get rashes from every use.
Me llamo Loli tengo 37 años y vivo en Madrid y me diagnoticaron la enfermedad de Degos en 1996 despues de que perdiera la vision del ojo izquierdo, tengo lesiones en la piel pero por suerte no han evolucionado y aunque sigo con revisiones con mi dermatóloga no tengo nuevas lesiones y soy optimista y pienso que no se me va ha desarrollar y que no tendré problemas intestinales ni cerebrales. Hay que pensar en positivo, vivir y disfrutar que la vida merece la pena. Si algún paciente de esta enfermedad de España (o de cualquier parte del mundo) se quiere poner en contacto estaré encantada.
My wife Cathy was diagnosed with Degos a little over a year ago. We tried talking with as many family members as possible to see if we could find a prior family member who might have had it. We could find a single case in her family tree. The lesions have appeared on her hands, arms, neck, chest, stomach, legs, and feet. She has new lesions appear every month. More lesion than we can count or too many to try to count. They are small, hardly noticeable when fully clothed.
Drupal theme by Kiwi Themes.