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 was that the PA saw “skin eruptions all the time.” Then, I needed an answer for the skin lesions that spread to all of my limbs and torso. The lesions were inflamed and very tender, and they caused discomfort when wearing clothing.

I searched the internet for answers, and I found skin lesions that looked similar. I saw pictures of people with Degos disease or Malignant Atrophic Papulosis. 

I called a dermatologist, who agreed with my findings of Cutaneous Degos disease symptoms and confirmed it two ‘punch biopsies’ of my skin lesions.

By this time, the dermatologists said my lesions were “burned out,” and they did feel better. 

The other information I had found on the internet was very frightening. There were several people with Degos disease, who were diagnosed, only after their deaths, due to bowel perforations and Sepsis. 

Since I did not have any abdominal pain, I increased my baby aspirin to twice daily and tried to treat my skin lesions on my own.

It was in October, 2013 that I was hospitalized with severe abdominal pain, cramping, nausea, and vomiting. CT Scans revealed small bowel inflammation, but doctors had no definite reason or diagnosis for my symptoms. 

I attempted to educate them about my Degos disease and the possibility of involvement in the gastrointestinal tract. They listened but could not prove or disprove evidence of Degos disease, then the symptoms subsided, and I was sent home.

I attempted to contact one of the physicians that I had read about on the internet, who had treated Degos patients. I was not successful. I self-treated by modifying my diet: I stopped eating meat, drinking soda, and alcoholic beverages. 

I began to eliminate processed foods and other foods that seemed to aggravate my abdominal pain. I managed my symptoms for about two years.

In the Fall of 2015, abdominal episodes occurred on a weekly basis. It felt as if my bowel was going to explode. I did not feel confident that any local physicians would know what to do for me.

At that time, God had blessed me with a nephew, Dr. Patrick Schofield, who was completing his residency at Massachusetts General Hospital, where one of the Degos doctors, I read about also practiced. 

My nephew contacted Dr. Patrick Whalen and reviewed my case with him. Dr. Whalen immediately contacted Dr. Lee Shapiro, a rheumatologist who was treating Degos patient in New York.

Dr. Shapiro contacted me and, within days, saw me at The Rheumatology Center in Albany, New York. He was sure that I have Systemic Degos disease with gastrointestinal involvement. 

He gently, but thoroughly explained my immediate need for treatment to prevent life-threatening events. He mobilized his dedicated team of professionals, a team of physicians at Hospital University of Pennsylvania, even the media, to fight for my medical needs!

An exploratory laparoscopy confirmed that I have Systemic Malignant Atrophic Papulosis. I had Degos lesions on my entire bowel and throughout my abdominal cavity, including my liver. 

By now, I understood that Degos lesions are caused by lack of blood flow to areas.

I was denied treatment three times due to lack of medicalevidence; however, armed with medical evidence and documented evidence of his successful treatment of two other patients with systemic Degos disease, Dr. Shapiro appealed to my insurance provider for approval of Soliris/Eculizumab therapy.

Again, I was blessed that my insurance provider, Highmark Blue Cross and Blue Shield of Northeastern Pennsylvania, had a policy allowing an independent case review after all appeals within the organization were denied. 

It was determined that Soliris therapy had documented success in other cases and it was the only known treatment for my very rare disease.

Dr. Lee Shapiro is the most brilliant and dedicated physician. He has been with me and continues to be with me every step of my journey with Degos disease. 

Today, I am thriving and continuing to enjoy my life with family and friends.

I hope that my story will help others struggling with Degos disease on their journey.

Theresa Slayton