The poor recognition around EDS is not only highlighted in disability sport (after being dispelled from Paralympic inclusion criteria)…
Before I start, I’d like to introduce myself, I’m Chris, the Clinical Director for Orthotix. I have previously worked in the NHS as an Orthotist, assessing and supplying patients in their need for specialist bracing and supports in specialist clinics across the UK.
Earlier in December on a drive to work I overheard a story about a young boy called Tom from Preston. Tom is a teenager who has been nominated for a Teen Hero award through Greg James’s morning radio show. Tom has been diagnosed with a condition called Ehlers Danlos (EDS), which has resulted in him struggling to move and mobilise, causing excessive pain in his lower legs and has subsequently stopped him walking.
Despite this, Tom has started an action sport called WCMX (wheelchair moto cross). With in only 10 months Tom has got himself ranked no.1 in the UK. The sport is up and coming and is being considered for the 2028 Los Angeles Paralympics. However, what really shocked me whilst listening that morning is that EDS is not considered or recognised as a disability in sport, as it is rather seen as an advantage. After listening to this I decided to speak to an old school friend and neighbour Sam. Sam is an EDS sufferer and national campaigner and founder of rareresilience.com
Sam explains that EDS really doesn’t have the recognition it deserves, not just in Para’ sports, but in the health care professions also. She explains that it has taken years of work and campaigning around EDS awareness to start to get in recognised, however, it’s still greatly unknown and misunderstood in the healthcare industry, with even GP’s still not understanding or treating the symptoms accordingly.
Today I want to briefly explain what EDS is, try and build some public awareness on the condition, helping establish better recognition in the healthcare industry and to also help Tom’s international endeavours to get the sport and condition recognised at the 2028 L.A. Paralympics.
So, what is EDS?
Ehlers Danlos is a connective tissue disorder. It’s linked to changes in your genetics and the condition affects connective tissues throughout the body (including muscles, tendons, and the organs including your heart, and even brain). The body’s connective tissue becomes much more flexible than it should and becomes weak and stretchy. EDS sufferers commonly have hyper mobility symptoms throughout their body and are much more prone to having excessive joint instability and pain. The issues caused from this disorder can affect standing, walking, and daily functioning with such things we take for granted like subconsciously holding up our heads and picking up simple things like a cup of tea.
Due to the condition being non visible, EDS is still not being recognised. The poor recognition around EDS is not only highlighted in disability sport (after being dispelled from Paralympic inclusion criteria), but it seems throughout the healthcare industry also. Excessive limb and joint pain usually go undiagnosed for years and years or are mis-diagnosed as other conditions such as fibromyalgia, M.E or chronic fatigue.
Previously closely linked into similar branches of hypermobility like Hypermobility Syndrome, EDS was finally separated from hypermobility as its own specific classification in 2017. Whereas generalised hyper mobility can improve with therapy and exercise, EDS is much more difficult to treat and control. It is recommended to maintain some level of muscle strengthening but there is emphasis on avoiding unwanted stress to limit the risk of irreversible damage.
EDS Society and EDS Support UK exclusively represent, and support sufferers of EDS, helping to minimise the impact of the condition on their lives. They have built physical and visual support groups helping sufferers, and are engaged with research, charity funding and help to support EDS communities (such as Sam and her campaign work). The work done by such organisations and people are helping to build knowledge around EDS, and they rely on support and fundraising to allow continual development, in which they appreciate any support.
My Thought on EDS.