The University of Virginia is launching a new national care program for Ehlers-Danlos syndrome and other hypermobility disorders. Once open, it will be one of only 19 such programs worldwide.
The program is set to open at the end of this year or early next year in Fontaine Research Park at 500 Ray C. Hunt Drive, which already hosts four other UVa Health specialty clinics. Funding for the program came from an anonymous $3 million donation.
“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,” Wendy Horton, CEO of UVa Medical Center in Charlottesville, said in a statement.
Ehlers-Danlos syndrome and other hypermobility disorders affect skin, joints and blood vessels. These disorders are difficult to diagnose because they can cause pain and medical issues throughout the body. Symptoms, which can be mild for some but life-threatening for others, include gastrointestinal issues, orthopedic injuries, spine problems and heart disease.
“As a result, patients can be referred to multiple subspecialists for years prior to formal diagnosis, and often receive fragmented care,” Dr. Ina Stephens, a UVa Health pediatrician, said in a statement. “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.”
Stephens leads Ehlers-Danlos syndrome care for children, and Dr. Dacre Knight, medical director of the Ehlers-Danlos syndrome clinic at the Mayo Clinic, will join UVa Health in September to oversee care for adult patients. UVa Health is also looking to add a third Ehlers-Danlos specialist to expand access further.
The exact prevalence rate of Ehlers-Danlos syndrome is unknown, but it is estimated to affect between 1 in every 5,000 and every 100,000 people. It is most often inherited since the syndrome is a product of a faulty gene, but there have been instances of people with the gene whose parents did not have it.
There is no cure for Ehlers-Danlos syndrome. The goal of current treatments is solely to help patients better manage their pain and symptoms.
The program at UVa will allow patients to meet with Knight and Stephens in addition to:
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.And other specialists as needed, based on each patient’s specific medical conditions.
There are only 15 other treatment programs for the condition in the United States. The closest program to Charlottesville is more than four hours away at the University of Pennsylvania, so UVa expects to see patients from all over the commonwealth of Virginia and beyond.
UVa’s program will coordinate all care needs for patients who live within a few hours of Charlottesville, but for patients who live 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.”
Source: www.dailyprogress.com