Clinical Center News
Summer 2018

Clinical Center patient experiences enrich International Degos Disease Symposium

"I'm fighting a terrible vascular disease"
Patient with Degos disease addresses symposium attendees
Theresa Slayton speaks at the 2018 International Degos Disease Symposium April 27.
NIH doctor addresses attendees at the symposium
Dr. Manfred Boehm, a senior investigator in the NIH National Heart, Lung, and Blood Institute's laboratory of cardiovascular regenerative medicine gave opening remarks at the symposium.

A group of clinicians and researchers in vascular medicine, dermatology, hematology and other specialties gathered in the NIH Clinical Center April 27 for the 2018 International Degos Disease Symposium, hosted by the National Heart, Lung, and Blood Institute. Also known as atrophic malignant papulosis, Degos disease is a perplexing, ultra-rare disease affecting the skin and digestive system with approximately 300 known cases.

Between presentations on epidemiology, genetics, pathology and treatment, two patients spoke about their experience with an exceedingly rare and potentially fatal disease.

The longest known survivor of Degos disease, a gentleman named Roger, spoke about his symptoms, path to diagnosis and worsening condition put him in a coma. Roger discussed how he was able to be treated with a drug on a 'compassionate use' basis. The drug is approved for another rare disease but not yet for those with Degos disease.

Roger concluded his talk by encouraging others to "learn more about the disease. Share your ideas today and carry those thoughts into action tomorrow and in the years to come."

Later in the day, Theresa Slayton spoke poignantly about her alarming skin lesions and abdominal discomfort, and her own research leading her to suspect Degos disease.
"There was almost no information and seemingly no treatment," she said.

Slayton had to search to find specialists and to discover that dietary adjustments could help the digestive discomfort. She spoke of the importance of keeping hope alive while fighting to understand and overcome the poorly understood disease.

Together, the comments from each presenter were a vivid reminder of the challenges rare disease patients face in getting answers, finding support and holding on to hope.

Senior leaders at NIH cut a ribbon opening two hospice suites at the Clinical Center
Laptop with stethoscope nearby
Patient Photography Studio
Dr. Francis Collins, director of the NIH sties in a chair to the left. Barbra Streisand holds a microphone and sits in a chair to the right – speaks to the audience
Dr. James Gilman stands with Alba C. Murphy as they smile and hold a certificate
A paper cutout of a hand shape with a stick on the end. Text on the paper says I [heart] clean hands
Patient with Degos disease addresses symposium attendees
CDC and NIH representatives stand in a special isolation patient room at the NIH Clinical Center
Eight young men and women line up holding graduation certificates in Lipsett Auditorium
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NIH Clinical Center volunteer Chaoyang Wang
Woman with scientific cap on her head plays a touch game
Doctors at NIH speak in a lecture hall during Nurses Week
NIH Clinical Center doctor receives award
Children participate in Take Your Child to Work Day Hematology Lab
Leslie Wehrlen holds a plaque.
Sixteen women, graduates of the program and departmental leaders, gather for a photo
Pius Aiyelawo swearing into the Senior Executive Service with Dr. Lawrence Tabak
Jackson Taylor (right) and his donor Sean McLaughlin (left)
Dr. Thomas Burklow
Two care providers look at a computer
Child reading a book
NIH employee, Ricky Day, trys the prototype device
U.S. Surgeon General Dr. Jerome Adams tours Clinical Center with CC CEO Dr. James K. Gilman
First Lady Melania Trump gets together with five children to pose for a picture
Patient and doctor
Harold Varmus, Robert Frasca, Mark Hatfield and John Gallin at the groundbreaking of the hospital's new addition
Black and White photo of the first meeting of the National Advisory Eye Council (13 men) gathering on steps
Jim Gilman at Town Hall in Masur Auditorium
Dr. John I. Gallin cuts the ribbon with Heidi Grolig and Jerry Sachs.
People line up at the new marketplace Starbucks café