National EDS treatment program to open at UVA Health
Endeavor will include multidisciplinary specialists to provide integrated care
A national program at the University of Virginia (UVA) will provide comprehensive support for connective tissue disorders such as Ehlers-Danlos syndrome (EDS), which are generally characterized by hypermobile joints.
With a targeted opening date for late this year or early 2026, the program will include multidisciplinary specialists to provide integrated care. Dacre Knight, MD, currently heading the EDS clinic at the Mayo Clinic, will oversee adult patients. Ina Stephens, MD, of UVA Health will continue in her role leading pediatric EDS care.
“Patients with Ehlers-Danlos syndrome need ongoing, tailored care to manage the unique challenges they face with this condition,” Knight said in a UVA Health news story. “We are going to provide an integrative approach to helping patients best manage this chronic, debilitating illness.”
Fifteen specialized EDS treatment programs exist in the U.S., and there’s about 18 globally, according to the press release. The new center at UVA Health will serve patients and providers in Virginia and elsewhere in the U.S.
A multidisciplinary approach to EDS care
Caused by mutations in at least 20 different genes, EDS is made up of several types that affect connective tissues, which are important for the structure of joints, skin, blood vessels, and other organs and tissues. Problems with connective tissue can lead to joints that move past the normal range of motion and fragile skin. But because connective tissues are so widespread, EDS symptoms can also manifest as gastrointestinal issues, orthopedic injuries, problems with the cervical spine, and heart disease.. This can make a diagnosis complicated, according to Stephens.
“Patients can be referred to multiple subspecialists for years prior to formal diagnosis, and often receive fragmented care,” Stephens said. “That’s what this program is designed to address.”
The effort will approach patient care from a multidisciplinary perspective, centralizing treatment in the program. ”Patients require multisystem, multidisciplinary care, and the integrative medicine approach is what patients need to diagnose and fully care for these conditions,” Stephens said.
Genetic specialists will help patients pinpoint the causes of their EDS, while physical therapists will help design a treatment approach to address specific symptoms. Sessions with psychologists will help address chronic pain and other specialists will also be available, as needed. UVA Health hopes to add a third EDS specialist to join Knight and Stephens.
For people with EDS who live within a few hours of Charlottesville, the UVA Health program will coordinate care. Patients from farther away will develop a plan in coordination with the program and local providers.
A $3 million donation will enable the clinic to open, according to the news release. “We greatly appreciate the help from a generous donor to provide a needed destination for patients with Ehlers-Danlos syndrome to get the highly specialized, comprehensive care they need,” said Wendy Horton, CEO of UVA Health University Medical Center. “Their donation will help us build out a program that will serve patients from across Virginia as well as throughout the United States.”
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