Global Summit for Degos Disease Brings Together Doctors, Researchers, Patients and Families to Discuss Very Rare Disease
SARATOGA SPRINGS, NY – Patients and families affected by Degos Disease from around the world joined physicians and researchers in Saratoga Springs on Thursday, June 30 for the Degos Disease Global Summit. This gathering aimed to raise awareness about this rare condition and to advance the development of a Degos Disease community.
“The goals of the summit were to build a Degos Disease community; raise awareness about the condition; and begin conversations that will help advance research, develop a patient registry, improve access to treatments, and educate and support those living with this rare condition,” explained Lee Shapiro, MD, rheumatologist and organizer of the Degos Disease Global Summit. “Serendipity, collaboration, and the willingness of others to work against the clock and against the odds to help save lives is what our story has been about. Our work has only just begun, but there is a lot of hope and momentum.”
Degos disease, also known as malignant atrophic papulosis, is a very rare illness that affects a person’s blood vessels. When cells in the linings of veins and arteries under the skin become inflamed and swell, this restricts blood flow, resulting in spots or lesions that appear on the skin. The spots on the skin first appear small, red rimmed with a white center, and raised, but over time flatten and become depressed. The blood vessels affected include those that supply the skin, eyes, gastrointestinal tract, heart, bladder, and central nervous system.
There is a spectrum of Degos disease progression. According to Dr. Shapiro, it starts on the skin and for an estimated two thirds of patients does not go beyond a cutaneous form. Approximately one third of cases become systemic, meaning that patients develop internal manifestations of the lesions, which can block blood vessels and result in a host of life threatening complications, such as bowel perforation and stroke.
Degos disease was first described in the early 1940s by a French dermatologist, but the cause is still not known. Treatments for the condition are limited, with no FDA-approved medications available for this indication.
The Degos Disease Global Summit, presented by Steffens Scleroderma Center in partnership with the Patient Experience Project, included the following participants:
* Families affected by Degos disease who came from various regions of New York State (eg, Albany, Manhattan, Long Island, and the Plattsburgh area), as well as from Pennsylvania, New Hampshire, Massachusetts, Canada, and England
* Lee Shapiro, MD, Steffens Scleroderma Center at the Center for Rheumatology, Albany and Saratoga Springs, New York
* Manfred Boehm, MD, National Institutes of Health, National Heart Lung Blood Institute
* Aixa Toledo, MD, Center for Rheumatology
* Jessica Farrell, PharmD, Albany College of Pharmacy and Health Sciences
* Judith Calder, Degos patient, advocate, and founder of Degosdisease.com
* Daniel Bobear, president and founder of the Patient Experience Project
“When we heard about Dr. Shapiro’s work, we jumped right in to help because we know what a difference connection can make, especially in rare disease communities,” said Dan Bobear, president of the Patient Experience Project, a communications firm specializing in patient-centered content for rare and chronic conditions. “This global meeting will go a long way in raising awareness and building the Degos community.”