(From left) Ina Stephens, MD, and Dacre Knight, MD
UVA Health is opening a national program specializing in comprehensive care for Ehlers-Danlos syndromes and other hypermobility disorders, a difficult-to-diagnose collection of connective tissue disorders that cause pain and medical issues throughout the body. The disorders are passed down through families and frequently cause symptoms such as hypermobile joints, and skin and vascular fragility. In some cases, the conditions can be life-threatening.
Backed by a $3 million donation, UVA Health is targeting an opening date between late 2025 and early 2026 for the new program at 500 Ray C. Hunt Drive in Fontaine Research Park. There are only 15 treatment programs for the condition in the United States and only about 18 around the world, so UVA Health leaders anticipate this program will create a much-needed solution for patients and referring providers seeking this care from across Virginia and far beyond.
“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, PharmD, MBA, chief executive officer 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.”
Dacre Knight, MD, medical director of the Ehlers-Danlos syndrome clinic at Mayo Clinic, will join UVA Health in September to oversee care for adult patients. UVA Health pediatrician Ina Stephens, MD, will continue to lead Ehlers- Danlos syndrome care for children. UVA Health is also looking to add a third Ehlers-Danlos specialist to expand access further.
The key signs of Ehlers-Danlos syndrome – a genetic disorder – are joint hypermobility, skin and vascular fragility and generalized connective tissue friability, Stephens said. However, since connective tissues are found throughout the body, patients with Ehlers-Danlos syndrome can present with symptoms that range from gastrointestinal issues or orthopedic injuries to cervical spine problems and heart disease, she said.
“As a result, 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. Patients require multisystem, multidisciplinary care, and the integrative medicine approach is what patients need to diagnose and fully care for these conditions.”
There is no cure for Ehlers-Danlos syndrome; the goal is to help patients better manage their pain and symptoms. During their visits to the program, patients will meet with Knight or Stephens, along with:
- a genetics specialist to work on pinpointing the underlying cause of each patient’s syndrome
- a physical therapist to develop a plan tailored to each patient’s symptoms
- a psychologist to help patients deal with chronic pain
- other specialists as needed based on each patient’s specific medical conditions
The program will coordinate all care needs for patients who live within a few hours of Charlottesville; for patients living farther away, the program will develop a care plan and partner with medical providers closer to the patient’s home.
“Patients with Ehlers-Danlos syndrome need ongoing, tailored care to manage the unique challenges they face with this condition,” Knight said. “We are going to provide an integrative approach to helping patients best manage this chronic, debilitating illness.”
Media Contact: Eric Swensen, Public Information Officer, UVA Health.
Filed Under: Clinical