Patient Stories

During 2012, I developed unusual sores on my skin. I was treated with various lotions by a local physician assistant.

Almost two years later, the only report…

Our beautiful daughter, Maia Lily Douglas, was born at Barnet Hospital, London July 4, 2013 with two porcelain white lesions on her forearm and thigh. Nobody at the hospital knew what it could be, we were told she was…

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.

Ernie was a senior in high school and…

I’m Judith’s husband, and thought I should write our story in the light of reading some recent emails from new patients. I will keep it as short as possible, as I can be long winded on the subject!

Hi everyone, I’m glad to finally be able to reach out to others like me with Degos disease.

My name is Julia Forsberg, I am a 22-year-old Australian girl living in…

I first noticed a bump on my wrist/hand area approximately 3.5 years ago at the age of 22.

I began noticing more of these bumps on my arms/legs/trunk area.

Hi, my name is Mary. I live in the Chicago area.

I was diagnosed with Degos in 2002.

My current medications include…

Hi everyone. I was diagnosed yesterday (December 10, 2007) with Degos disease.

I have yet to have the tests to see if it is benign or systemic. I am married with…

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…

Rio Carroll was diagnosed with Degos disease at Birmingham Children’s Hospital, UK in April 2007.

Unfortunately the disease progressed quite rapidly and attacked Rio’s…

My sister, Mary, was diagnosed with Degos disease at birth. Doctors gave her about 2-3 years but fought on until just two months before her fourth birthday. I was just a month away from my 7th birthday.

I’m a 32-year-old black male. I was diagnosed with Systemic Lupus Erythematosus 11 years ago.

Now in 2004, I went to the dermatologist, after noticing white…

Originally written in Spanish, this is an approximate translation.

My name is Loli, I am 37 years old and I live in Madrid. I was diagnosed with Degos disease in 1996 after I lost…

My wife Cathy was diagnosed with Degos disease 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…

I am 23 years old and was diagnosed with Degos disease in August 2005.

I noticed strange spots on my arms in 2002 and went to see the dermatologist who diagnosed me…

Hello, I am from Madison, Wisconsin, and I had been diagnosed with Degos disease about seven years ago, and I have been a friend on this site ever since.

My name is Carlos, and I am a 63-year-old male.

I was diagnosed with Degos skin lessions in 1985, and in my opinion, have been successfully treated by…

Hiyas!

My name is Stephanie! I am a 23-year-old stay-at-home mom.

My son Sedric is the highlight of my…

Originally written in German, this is an approximate translation.

I was diagnosed with Degos in 2003. However, I am convinced that my skin lesions have existed since 1988…

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’ve decided to film this series of videos to share my story living with Degos disease, a very rare blood/skin disorder. Hope you enjoy! Please don’t forget to subscribe and stay tuned for more content!

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…

In year 2000, I was 21 years old, I was diagnosed with Degos diagnose.

The doctor said, that this disease leads to death, so I was very shocked.

I’m 51 yrs old and was diagnosed with Degos disease in August of 1996.

I noticed a spot on my right thigh in March of 1996, but I didn’t really think anything of it.

RIP Edward Cahill
February 19, 1953–March 17, 2008

Lanarkshire, Scotland

This is the story of Eddie Cahill since…

I have had my story here for a long time, so it seems time to update.

I have not made any progress with a “fix” for Degos disease, but I have found comfort in having just one…

Hi, I was diagnosed with Degos disease about 2 and a half years ago.

I first noticed a sore on my arm that wouldn’t heal. I went to my regular doctor who then referred me to a…

I’m a 27-year-old woman who noticed a spot on my leg in May 2000.

After seeing another lesion on my forearm in October, I decided to visit a doctor to find out what they were.

I was first diagnosed with Degos disease July 2002; however, I noticed the first two lesions in March of 2001.

They itched terribly and I thought that perhaps I had been bitten by a spider…

Hello everyone, I would like to share my experience with Degos disease (as a 39-year-old French patient).

I started to see symptoms of the disease in February 2022, papules…

My sister, Dr. Jessica Ann Pye, or “Sissy” as I liked to call her, was a modern and strong woman who did everything with confidence, creativity and ease. She was an accomplished professor, a loving mother and wife…

Our precious son Adam came into our lives with a light that shone so brightly, filling every moment with joy and wonder.

In his four short years, he taught us…