Should Ehlers Danlos be classed as a disability in sport?

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.

We need to have better understanding around EDS and need to help educate people about the condition, not only in the public eye, but in the eyes of healthcare professionals, the healthcare industry and in sporting bodies like the Paralympics.

With continual support and the ongoing accomplishments by people such as my friend Sam, Tom and charities like EDS Support UK, EDS will hopefully become more known. Care pathways will develop and create assistance to EDS sufferers across the UK (both diagnosed and undiagnosed) helping them to be able to continue living normal lives focused less on pain, and more on their aspirations. One example being able to stand with Tom in getting the recognition and ability to compete in the L.A 2028 Paralympics, which essentially is what highlighted this whole matter.

I would like the end goal for my HotTopix to be that understanding around EDS can improve, and to prompt people to research it. To show support in the fact that it needs better recognition and to support Sam and EDS Support UK in creating better healthcare pathways and helping Tom’s efforts to get the condition more recognition in disability sport. I think this young man deserves a medal for all his hard work, not just for the things he has achieved in such a short time within this sport, but hopefully in his ability to get a medal in the 2028 Paralympics.