The Massachusetts General Hospital will host the first ever International Symposium on Degos Disease and Related Vasculopathies on Friday, November 9 from 1:00 to 5:00 p.m. The conference, featuring sessions for both caregivers and families, aims to bring together experts treating and researching this rare and often fatal blood disorder. The symposium is co-sponsored by the Pediatric Rheumatology Division of the Mass General Hospital for Children (MGHfC) and the Rheumatology Division of the MGH.
Fifteen speakers representing MGH and institutions from around the world will convene to share knowledge about possible causes and treatments for Degos disease. Degos disease is a systemic disorder that causes small and medium arteries to become blocked so that blood can not easily move through the body. During the first stage of the disease, characteristic skin lesions appear on the body that can last for weeks to years. The second stage is characterized by lesions in the brain and small intestine, which can lead to potentially life-threatening complications. The exact cause of Degos disease remains unknown.
Sandra Clancy, family adviser in the Coordinated Care Clinic at MGHfC, had a young son die of Degos disease in 2004. “After being diagnosed when he was five years old, my son was given an innovative therapy that unfortunately did not work in his case,” says Clancy, who helped organize the event. “Hopefully, in this symposium setting, ideas and experiences can be exchanged that will help other Degos disease patients in the future.”
“Once you’ve seen the unique rash of Degos disease, you never forget it,” says John Whelan, MD, a pediatric rheumatologist for the MGHfC. “We have the benefit with this symposium of bringing together a large group of patients who can help us make up for all the textbooks that provide no pictures and so little information about this potentially fatal condition.”
Following the afternoon symposium, participants will be joined by rheumatologists from around the world for a study group on Degos and related diseases at the American College of Rheumatology’s annual meeting at the Boston Convention Center.
Massachusetts General Hospital, established in 1811, is the original and largest teaching hospital of Harvard Medical School. The MGH conducts the largest hospital-based research program in the United States, with an annual research budget of nearly $500 million and major research centers in AIDS, cardiovascular research, cancer, computational and integrative biology, cutaneous biology, human genetics, medical imaging, neurodegenerative disorders, regenerative medicine, transplantation biology and photomedicine. MGH and Brigham and Women’s Hospital are founding members of Partners HealthCare HealthCare System, a Boston-based integrated health care delivery system.
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