Ehlers-Danlos Society Launches Center of Excellence Program
Seeking to reduce the average 10–12 year wait time for the diagnosis of a hypermobility spectrum disorder, the Ehlers-Danlos Society has created the Center of Excellence program to better educate both patients and physicians about these diseases.
The goal is to assist people with Ehlers-Danlos syndrome (EDS) globally by reducing wait times for diagnosis and treatment, helping to alleviate pain and symptoms, and providing education via in-person and virtual connections.
“We know that around the world, what is desperately needed is early diagnosis, validation, and effective multidisciplinary care,” Lara Bloom, president and CEO of the Ehlers-Danlos Society, said in a press release.
“We look forward to making this a reality,” Bloom said. “Our aim is that no matter where you live, you have access to a multidisciplinary team approach.”
EDS is a group of genetic conditions affecting the connective tissues that support skin, joints, blood vessels, and other tissues and organs. The different forms of EDS can cause a range of symptoms, from loose joints, weak muscles, and fragile skin to life-threatening complications such as spontaneous tears in blood vessels and problems with heart valves.
Because the disorder can impact different body systems, its wide-ranging symptoms can remain unconnected for many years. That, according to the international non-profit, may lead to misdiagnosis or delayed treatment, or ineffective or inappropriate therapies. As a result, it takes up to a dozen years, on average, for patients with EDS to get a diagnosis.
Furthermore, even with a diagnosis, follow-up care can be inadequate, with patients often not given supporting information about the condition, help with self-management that may improve quality of life, or where to find medical support.
These issues also apply to patients with hypermobility spectrum disorder or HSD, a group of conditions related to joint hypermobility, who are diagnosed when EDS is ruled out.
Each Center of Excellence will offer multidisciplinary healthcare teams specializing in pain, physical rehabilitation, gastroenterology, urogynecology, neurology, and neurosurgery. Mental health professionals also are included on these teams, along with people who are up-to-date with the latest research and therapies.
“We set a goal to learn about how multidisciplinary clinics work around the world, to enable us to use the gathered information as a guideline for developing the EDS Centers of Excellence,” said Clair Francomano, MD, professor of medical and molecular genetics at Indiana University School of Medicine.
“Although only a small number of multidisciplinary clinics exist for EDS and HSD worldwide, we were fortunate to collect invaluable qualitative data from prominent physicians and clinics in Australia, Belgium, Canada, France, Germany, Japan, Sweden, Switzerland, the United Kingdom, and the United States,” she added.
Another issue EDS patients face is the extent of travel that’s often needed for them to find a physician who knows how to manage and treat the condition. According to Bloom, finding a knowledgeable doctor often comes at great personal expense and long wait times.
In some countries, EDS or HDS is not even recognized, or there is little understanding of how to manage disease-related symptoms.
Along with in-person visits to the clinic, telehealth services and a helpline will be essential parts of each Center of Excellence, so that patients worldwide can access needed healthcare as well as find care if they are seriously ill.
“We want to think past bricks and mortar,” Bloom said. “We know that in each country and region, centers may look different based on the resources and clinical set-up, and we want this framework to function for all.”
Isabelle Brock, MD, from Indiana’s School of Medicine, noted that some people with EDS “might live hundreds of miles away from a Center of Excellence, or for one reason or another, patients may not be able to afford to attend an in-person or on-site appointment.”
The services offered will “allow physicians to reach out to those who would not receive the medical care they need and deserve because of distance,” Brock said.
She uses the European country of Switzerland as an example.
“It is crucial to have a helpline … to which patients can reach out to find clinics around Switzerland as there is not one multidisciplinary clinic” in the country, Brock said.
The Center of Excellence Program is planned to launch by August 2022, with 10 centers initially. The Ehlers-Danlos Society is seeking donations to support this initiative.
“We want the goal to be long-term care, for both the physical and the psychological aspects of living with these conditions,” Bloom said. “Both are essential to ensure that people living with EDS and HSD are offered the best chance at a good quality of life.”
“We know that is more than diagnosis and tests, it’s the language used, it’s the tone. It’s about someone feeling believed and validated,” she added.