The Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD)
The average time to diagnosis of an Ehlers-Danlos syndrome or hypermobility spectrum disorder is 10-12 years. For some, it can take decades.
Too many in our community report that they are forced to travel far and wide to access a physician who knows how to manage their healthcare, often at great personal expense, and often with incredibly long wait times of over two years. In some countries, there is no recognition of EDS or HSD, or very little knowledge or understanding on how to manage symptoms.
These are multi-systemic conditions, and problems often go unconnected for many years. Many report being told their symptoms are “all in their head” or are denied recognition of pain and other widespread symptoms they experience. Misdiagnosis is common, delaying treatment, or resulting in unnecessary surgeries or unsuitable treatments.
Early diagnosis is crucial to positive patient health, but after diagnosis, there is often little or no follow-up care. When diagnosed, patients are often not given any information about their condition, offered supportive self-management for aspects of their care, adaptions that can be made to improve quality of life, or informed about where to find support for a chronic, lifelong condition.
Global Centers of Excellence Vision: Multi-Disciplinary Team Care
In 2022, The Ehlers-Danlos Society is committed to increasing the availability of clinical services for people living with EDS and HSD, decreasing the diagnostic odyssey, and standardizing communication and care for those impacted by EDS and HSD.
Toward that end, our aim is to develop a network of Excellence for EDS and HSD around the globe. This will be a first step toward the goal of developing a network of Centers that will assist thousands of people worldwide, and alleviate their pain and symptoms.
Clinics around the globe
Our plan is for the COE program to be launched by August 2022. Our aim is to support ten centers initially, and we are looking for donations to support this exciting initiative and make it a reality.
“We know that around the world, what is desperately needed is early diagnosis, validation, and effective multidisciplinary care. We look forward to making this a reality. Our aim is that no matter where you live, you have access to a multidisciplinary team approach,” explained Lara Bloom, President, and CEO for The Ehlers-Danlos Society.
Building a bridge between hope and reality
“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,” described Dr. Clair Francomano, Professor, Medical and Molecular Genetics, 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 of America.” Alongside the in-person clinic services, telehealth services and a helpline will be integral aspects of the Centers of Excellence. Telehealth systems have proved to be essential during the COVID-19 global pandemic and shown to have the opportunity to greatly increase access to care. Telehealth services within the Center of Excellence clinics will enable patients country-wide and globally to be seen, alongside providing access to care for patients who are seriously ill.
“We want to think past bricks and mortar. 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,” detailed Lara Bloom.
“Patients 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. These services will allow physicians to reach out to those who would not receive the medical care they need and deserve because of distance,” explained Dr. Isabelle Brock, Visiting Scientist, Medical and Molecular Genetics, Indiana University School of Medicine, “It is crucial to have a helpline, as seen in Switzerland, to which patients can reach out to find clinics around Switzerland as there is not one multidisciplinary clinic.”
The Ehlers-Danlos Society’s Center of Excellence program will ensure critical standards of care with each center required to meet rigorous clinical, research, professional education, and patient care criteria. Geographical, financial, and cultural considerations will advance the highest standards of care to improve the lives of people living with EDS, HSD, and related conditions worldwide.
“We want the goal to be long-term care, for both the physical and the psychological aspects of living with these conditions. Both are essential to ensure that people living with EDS and HSD are offered the best chance at a good quality of life that everyone so richly deserves. 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.” said Lara Bloom, President, and CEO, The Ehlers-Danlos Society.
For more information about becoming a Center of Excellence, or to support this program, please contact firstname.lastname@example.org
The Ehlers-Danlos Society uses The Network for Good platform to receive online donations and their details will appear on your credit card statement following a donation to our organization. Network for Good’s Donor Advised Fund is an accredited charity by the Better Business Bureau. At the current time we are unable to accept donations from persons located in Mississippi.