Ehlers-Danlos syndromes (EDS) are a group of heritable connective tissue disorders that affects the most abundant protein in the body - collagen. 30% of all protein is collagen, skin, muscles, bones, tendons, and ligaments are all constructed with collagen, and so the implications of any disorders are manifest. A common symptom is extra joint mobility and skin elasticity. A missed or delayed diagnosis of EDS can have a major negative impact on treatment outcomes especially for major surgery such as joint replacement, or where vascular fragility is likely to be an issue.
EDS implications for joint surgery
UK leading Orthopaedic Surgeons, such as Mr Ian McDermott at London Sports Orthopaedics are acutely aware of the challenges of EDS and joint hypermobility. For these joint experts, a diagnosis of EDS has a radical bearing on appropriate choice of joint treatment options.
There are thirteen types of EDS described in the current classification criteria, each with a set of core features, ranging from joint hypermobility and skin hyperextensibility to organ and vascular fragility. Hypermobility spectrum disorders (HSD) refer to individuals who experience symptomatic joint hypermobility, but do not meet the current 2017 criteria for a diagnosis of hypermobile EDS (hEDS).
EDS and the lived experience
Living with EDS or HSD means facing a healthcare system that too often fails to understand, recognise, or support those with lived experience. Delayed diagnoses, fragmented care, and systemic disbelief are still far too common, but Professor Lara Bloom suggests that change is possible.
Lara Bloom, who is Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, knows this at first hand. Prof Bloom explains that she was diagnosed with (hEDS) at the age of 24, after a "13-year diagnostic odyssey that began in my early teens". Prof Bloom states, "My lived experience of navigating a complex and poorly understood condition has shaped both my professional path and personal commitment to advocacy".
In an article for Total Health, Patients facing Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), Prof Bloom explains the difficulties that EDS patients face when trying to explain their situation to those doctors who are still not aware of the syndromes.
Gaslighting or guidance?
Prof Bloom says, "Many health professionals receive little to no training on EDS and HSD during medical school or specialist training. As a result, signs and symptoms are often missed or misattributed to anxiety, growing pains, fibromyalgia, or even malingering. Those with lived experience are frequently dismissed or misdiagnosed, leading to a lack of trust in the medical system".
"Too many face gaslighting instead of guidance. They're told it's all in their heads, or that moving will only make things worse. Some are left without answers for years, watching their bodies deteriorate when they could have been building strength, confidence, and autonomy with the right support".
Movement is medicine
We say movement is medicine, but for it to truly be medicine, it has to be safe, accessible, and equitable. We cannot celebrate movement without acknowledging the barriers that prevent so many from achieving it.
I’m not just encouraging safe movement, I’m continuing to advocate for a world where everyone with EDS and HSD has the chance to move without fear. To move with dignity. To move towards healing.
