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.

Stories
Karen Baker, Dr. Colleen Hadigan and Victoria Anderson stand in a hallway.
Dr. Daniel Kastner examining a patient at the NIH Clinical Center
A nurse provides Dr. Anthony Fauci a flu shot
Food allergy
NIH staff gather at a relay race at the NIH Clinical Center
Dr. Gilman speaks at a podium
Four people listen to a dietician speak about the Nutrition Department while a employee preps food
Prediction and probability maps from prostate cancer researchers
Dr. Francis Collins, Shawn Thomas and Dr. Jim Gilman stand on stage as Thomas holds a plaque
Two men up close to the MRI magnet, outside
Dr. Christopher Pleyer, Dr. Kelly Stone and Dr. Robert Lembo stand in front of a screen that says Distinguished Clinical Teacher Award Winner. Stone holds a plaque
Artwork decorates stairwells
Dr. William Ward speaks at a podium and a screen behind him is a poster that says Immunohematology & Blood Transfusion, 27th Annual Symposium
Four students and a teacher hold an oversized check to benefits patients at the NIH Clinical Center
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
A four panel exhibit with photos, text and artifacts on NIH medical pioneers Christian Anfinsen and Michael Potter
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
Martha Rinker, speaker from the non-profit National Organization for Rare Disorders (NORD), addresses the audience on Rare Disease Day Feb. 29, 2016, at the NIH Clinical Center.
Betsy Furlong inspects the UV Illuminator cassette.
In January 2016, Dr. Robert Watcher visited the NIH and presented at a Contemporary Clinical Medicine: Great Teachers Lecture.
Scientists at the National Institutes of Health have identified a genetic mutation responsible for a rare form of inherited hives induced by vibration.
The atrium gift shop recently re-opened under management of the Foundation for the Advancement of Education in the Sciences
Avish Parashar brought audience members on stage to showcase that planning is important, but the ability to improvise is essential during a seminar on Dec. 3.
The open forum of the town hall provided an opportunity for staff to learn about Building 10 updates and offer input.