Patient Stories

If you have a story relating to Degos Disease, please send it to us using the contact form.

I count myself as one of the luckiest people ever. I’m 72 and may be the longest lived Degos patient ever.
The diagnosis of the extremely rare Degos disease had come with a dawning realisation that I might be about to suffer extreme pain and distress and die within months.
In 1997, aged 53, I’d noticed many red spots on my legs and thought they were sandfly bites after a holiday. They continued to appear and to develop white, dry centres. At this point I gave the spots little thought, but after seeing Dr Peter Coburn at Worthing Hospital I began to realise how serious this could be.

Attached is a PDF of an essay concerning the treatment of Degos Disease with Eculizumab, a specialist drug.

The essay was written by Li Yun Tan.

A LETTER TO PATIENTS WITH CHRONIC DISEASE
July 14, 2010
by Rob Lamberts
Dear Patients: You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like. How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue?

Hello, My name is Sue DuPont, the mother of 22 year old Ernie DuPont. Ernie was 17 years old when he was diagnosed with Degos disease. He was a senior in high school and was a great athlete. He was the goalie of the varsity soccer team and broke the sit up record for the high school he attended. He is also a wonderful person and son. He is a man of character. He was 15 when we saw his first spot and honestly we thought it was a pimple or something like that. We took him to the pediatrician and he said he had no idea what it was and said try to put neosporin on it for awhile.

I am Judith’s husband and thought I should write our story in the light of reading some recent e-mails from new patients. I will keep it as short as posssible as I can be long winded on the subject!
Judith was sent by her GP to a local dermatologist, Dr. Peter Coburn. He said that he thought the disease was Degos but would take a biopsy to verify. Judith came home and told me. It meant nothing to us. Unfortunately Judith looked it up on the internet. Death was the only prognosis. Three weeks later Dr.

Hi everyone, I’m so glad to finally be able to reach out to others like me here on the Degos website. My name is Julia Forsberg, I am a 22 year old Australian girl living in Brisbane, and on November 6th 2013 I was officially diagnosed with Degos Disease. Having only been diagnosed recently, my current emotional state is unstable and unpredictable.

The struggle for this answer was almost a year long, I had tried everything, steroid creams, elimination diets, supplements, detox, naturopathy, oils, but those infamous spots kept appearing.

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.

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