In 2018, Pradeep Chopra, MD, pain management specialist with a special interest in Ehlers-Danlos Syndromes, said in his webinar, “EDS is not a disease. It is a form of the human body.” (Slide 7, Pradeep Chopra). This is the same message that has become so essential to other communities as well, such as those with Autism. Or I should say, those who ARE Autistic.
And like Autism, EDS is a spectrum of it’s own, with some barely noticing more than heightened flexibility and soft skin, to those home in bed, fearful for the next wave of symptoms and wondering whether or not their next visit to the ER will give any relief, or hope…
The Warwick Medical School at the University Warwick in the UK, published a study in April of this very year which may finally provide that hope, and help explain in greater detail WHY there is such a broad spectrum of affliction in the Ehlers-Danlos Syndromes. The researchers themselves acknowledge that their information is neither new, nor unknown, but adjure the medical community to sit up and pay attention, because this overlooked and ignored feature of hypermobility spectrum disorders has the potential to throw the flood gates wide open on new diagnostic methods and treatment options for millions of people who live with an inherited OR acquired connective tissue disorder.
While both patients and practitioners in the US focus their energy and hope on a genetic identifier for the more common EDS type 3, the hypermobile variety, researchers in Europe and abroad have taken the bull by the horns and declared that more than another genetic marker must be found in order to truly make a difference in the lives of our community. Studies such as this are not just looking towards another genetic test that we will wait years to receive and be left with a diagnosis but no treatment. This perspective moves us towards a better future for the daily lives of Ehlers-Danlos patients. Lives where we can hope for the support and stability to live, play and work; not just survive.
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