UVA Health Unveils Groundbreaking National Program to Support Connective Tissue Disorders: What You Need to Know

CHARLOTTESVILLE, VA. – UVA Health is launching a new program dedicated to patients with Ehlers-Danlos syndromes and other hypermobility disorders. These complex conditions affect connective tissues, leading to issues like joint pain and skin fragility. In some cases, they can even be life-threatening.

With a generous donation of $3 million, the program is set to open between late 2025 and early 2026 at 500 Ray C. Hunt Drive in Fontaine Research Park. There are currently only 15 similar treatment programs in the U.S. and around 18 worldwide. This new initiative aims to fill a critical gap for patients seeking specialized care.

“This donation helps us create a dedicated space for patients with Ehlers-Danlos syndrome to receive the comprehensive care they need,” shared Wendy Horton, CEO of UVA Health University Medical Center. “We expect to serve patients not just from Virginia, but from across the country.”

Dr. Dacre Knight from the Mayo Clinic will join UVA Health this September to lead adult patient care, while pediatrician Dr. Ina Stephens will continue overseeing care for children. To expand their reach, UVA Health plans to bring in a third specialist focused on Ehlers-Danlos syndrome.

Key signs of Ehlers-Danlos syndrome include joint hypermobility, fragile skin, and weakened connective tissue, according to Dr. Stephens. Because connective tissues are widespread in the body, these disorders can cause a variety of symptoms, from gastrointestinal issues to cardiovascular concerns. Patients often experience long waits for a proper diagnosis, sometimes seeing multiple specialists without getting a comprehensive treatment plan.

“The goal of our program is to provide integrated care tailored to each patient’s needs,” Dr. Stephens emphasized. “A multidisciplinary approach is essential for effectively diagnosing and managing these complex conditions.”

While there is no cure, the program aims to help patients manage their symptoms. During visits, patients can expect to meet with:

• A genetics expert to identify the specific causes of their syndrome;
• A physical therapist for personalized rehabilitation plans;
• A psychologist to support those coping with chronic pain;
• Other specialists based on their unique medical needs.

This coordinated care model will benefit patients within a few hours of Charlottesville. For those farther away, the program will create a care plan that works alongside local healthcare providers.

“Patients with Ehlers-Danlos syndrome require ongoing, personalized care to effectively manage their symptoms,” Dr. Knight noted. “Our integrative approach aims to empower patients to navigate the unique challenges posed by this condition.”

With heightened awareness and focus on such disorders, patient reactions have been positive. Many are hopeful that this new program will minimize delays in diagnosis and bring a sense of community among those dealing with similar challenges. The need for specialized care in this area has never been more urgent, and initiatives like this one are crucial in addressing it.

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