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 appeared on my skin, 6 months later, seeing the lesions progress, I consulted a dermatologist who diagnosed me with molluscum contagiosum. This was nothing serious according to him, and treatable with common treatments.

In August 2023, noting the ineffectiveness of the treatments, I made an appointment with a dermatologist (Doctor Barbara Ferreira) at the Mouscron hospital in Belgium, but she was booking out 3 months, so my appointment was set for November 2023.

Returning from vacation in September 2023, I had to go to the emergency room following severe intestinal pain, simple colitis according to the emergency doctors (antibiotic treatment), so a colposcopy was ordered.

October 2023, the colposcopy was carried out and Crohn's disease was suspected following the samples taken. Two weeks later, my condition began to worsen, with constant pain in the intestines and weight loss every week. The medications they gave me for Crohn's disease did not work. The gastroenterologists looked for other avenues without success.

In November 2023, I was finally able to have my appointment with the dermatologist, who in five minutes diagnosed Degos disease (thanks to her), she still wanted to take a skin sample to confirm her diagnosis, the sample was was found to be positive two weeks later.

December 2023, following by the diagnosis of Degos disease, I was admitted to Huriez hospital in Lille (France) in the dermatology department.

January 2024, my health deteriorated greatly, with a weight loss of 18 kg in total and severe abdominal pain. A laparoscopy was performed with cleaning of the abdominal wall and intestines. I was hospitalized in internal medicine and seen by Professor Hachulla (Huriez Hospital in Lille, France) and his team from January 10 to March 1, 2024, during this period several treatments were administered in order to stop the progression of the disease. Abdominal scans showed that a large part of my intestines are affected by the disease (peritonitis), brain MRIs also show brain lesions, and my eyes are also attacked by the disease (right eye ischemia).

I had a second operation in February 2024 (laparoscopy and ileostomy) because I had a new peritonitis, and the surgeon discovered 2 centimeter holes in several places on my intestines. My condition is worrying at this time because I have lost a lot of weight, 54 kg (I am 1.85 m tall), and the Soliris treatment (eculizumab) alone is not enough.

My wife contacted Doctor Lee Shapiro, who was very helpful in redirecting us to his European counterparts (Professor Zouboulis and Dr Angela Kaindl). Anifrolumab is the treatment that changed the course of the disease, in two days the papules regressed or disappeared, eculizumab is also used, but at a higher dose. The mixture of the two treatments, with the addition of baricitinib, subsequently helped stabilize the disease.

Today (May 2024) I have almost returned to a normal life, I still have an ileostomy, but the connection of the intestine is planned for September 2024. I am still on Anifrolumab every 4 weeks and recently Soliris was replaced by Ultomiris (ravulizumab) every 8 weeks, as well as Baracitinib tablets every day. My condition is stable.

Degos disease can be stabilized, but due to its rarity, the hardest part remains diagnosing it.

I will let you know if my medical condition changes.

Thanks again to the different doctors and professors from several countries (USA, France, Belgium and Germany) for their help.

Dufour Jonathan, 39 years old, France