UVA Health has made significant strides in addressing the pressing needs of individuals suffering from Ehlers-Danlos syndromes (EDS) and other hypermobility disorders, launching a comprehensive program that will provide specialized care for these complex conditions. This initiative, set to open between late 2025 and early 2026 at Fontaine Research Park in Charlottesville, Virginia, aims to be a vital resource for patients across the nation.
Ehlers-Danlos syndromes are a collection of genetic connective tissue disorders that often go undiagnosed or are misdiagnosed. These conditions are characterized by joint hypermobility, skin and vascular fragility, and generalized connective tissue friability. Patients can experience a multitude of issues, including musculoskeletal pain, gastrointestinal problems, and cardiovascular complications, which can severely affect their quality of life. Unfortunately, the complexity of these symptoms frequently leads individuals to be referred to multiple specialists over years, obtaining fragmented care along the way.
UVA Health’s initiative is backed by a generous $3 million donation, a financial boost that underscores the urgent need for specialized care in this domain. Currently, there are only about 15 treatment programs in the United States and approximately 18 worldwide specializing in EDS and related disorders. This lack of resources leaves many patients in a dire position, often traveling long distances to seek necessary treatment. UVA Health aims to fill this gap, providing a centralized hub for diagnosis, treatment, and management of these conditions.
The program will be helmed by Dacre Knight, MD, currently the medical director of the Ehlers-Danlos syndrome clinic at Mayo Clinic, who will bring his expertise to UVA Health in September. Together with pediatrician Ina Stephens, MD, who will continue to lead care for children, the team aims to offer a multi-disciplinary approach tailored to the unique needs of each patient.
Key signs of Ehlers-Danlos syndrome include hypermobile joints and other associated issues, which can lead to a complex range of symptoms. According to Dr. Stephens, the challenges faced by patients go beyond typical joint concerns. “Since connective tissues are found throughout the body, patients can present with a wide array of symptoms, from orthopedic injuries and gastrointestinal issues to cervical spine problems that may affect overall health,” she stated. This is why the program places a high emphasis on a comprehensive, integrative approach to care.
Rather than focusing solely on symptom management, UVA Health is putting together a dedicated team to ensure that patients receive holistic care. Patients will have access to a range of specialists, including genetics experts to identify underlying causes, physical therapists to develop individualized rehabilitation plans, psychologists to help cope with chronic pain, and additional specialists as required based on each patient’s unique medical needs.
One of the primary goals is to offer continuous, tailored care that specifically addresses the unique challenges experienced by patients with these disorders. “Patients with Ehlers-Danlos syndrome need ongoing, tailored care to manage the unique challenges they face with this condition,” Dr. Knight emphasized. This coordinated approach is expected to drastically improve the patient experience, allowing them to focus on managing their conditions rather than navigating a fragmented healthcare system.
For patients residing within a few hours of Charlottesville, UVA Health’s program will offer a comprehensive care model that integrates various health services. However, recognizing that many patients will be traveling from farther away, the initiative is designed to develop care plans that enable collaboration with local medical providers, ensuring that patients receive appropriate treatment even in their home communities.
While there is currently no cure for Ehlers-Danlos syndrome, the launch of this specialized program represents a significant step forward in improving the quality of life for those affected. The focus will be on pain management and symptom relief, empowering patients to better manage their condition while fostering a supportive environment.
This ambitious endeavor by UVA Health not only aims to enhance treatment options but also seeks to create a nationally recognized center of excellence for connective tissue disorders. By focusing on integrative medicine, the program is setting the stage for patients to receive comprehensive, coordinated care that truly addresses the multifaceted nature of Ehlers-Danlos syndromes and other hypermobility disorders.
As awareness of connective tissue disorders continues to grow, UVA Health is taking bold steps to meet the needs of patients who often feel overlooked in traditional healthcare settings. The planned program represents not only a beacon of hope for patients in Virginia and beyond but also a commitment to advancing knowledge and treatment options for these complex and often misunderstood conditions.
In conclusion, the comprehensive care program being developed at UVA Health for Ehlers-Danlos syndromes and hypermobility disorders is poised to become a game-changer in the lives of many patients. Through collaborative efforts and a patient-centered approach, UVA Health is setting a new standard for the treatment of these challenging conditions, offering both practical solutions and a compassionate understanding of the struggles faced by the individuals affected.
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