Advocates Determined to Raise Awareness of Behçet’s Disease

More resources could improve life for patients with the rare disease.

For a full year, Rochell Magliocco thought she had lupus. Her doctor diagnosed her after she developed ulcers in her mouth. Then another doctor told her that she didn’t have lupus—she had multiple sclerosis. But that diagnosis wasn’t right either. After two years and more than 30 doctors, in 2014 she finally got a proper diagnosis—Behçet’s Disease.

For patients with Behçet’s Disease, this story is all too common. The disease is rare, affecting approximately 5.2 per 100,000 people in the United States, so few doctors are familiar with identifying it. There is no formal diagnostic test, and every patient’s experience is different.

“Most commonly, people see four or five physicians before they are even considering Behçet’s,” said Dr. Yusuf Yazici, M.D., clinical associate professor, Department of Medicine, New York University.

One of the main issues is a dearth of adequate resources for both doctors and patients to better understand this mystifying disease. In honor of this year’s Behçet’s Awareness Day on May 20, patients, physicians who specialize in Behcet’s Disease and advocates are on a mission to provide other doctors and patients with more information to help improve the lives of people living with this disease.

“Behcet’s is not a hopeless condition. And I think there are a lot of reasons for patients to have hope,” said Dr. Kenneth Calamia, M.D., Consultant, Rheumatology, Mayo Clinic Florida and Professor of medicine, Mayo Clinic School of Medicine and Science.

To learn more about Behçet’s Disease, visit the Behçet’s Connection website.