Invisible Disabilities: Ehlers Danlos Syndrome

“Life with EDS”

By Abigail Stafford

How many of you have heard of Ehlers Danlos Syndrome? My guess is not many. I hadn’t until I was diagnosed with the hypermobility form of it in the summer of 2010 at the age of 16. After 9 years of aching pain in my legs and joints, endless fatigue and misdiagnosis including Osgood Schlatters, shin splints, ‘growing pains’ and sporting injuries, I finally got the correct diagnosis when I was referred to a professor  at UCHL in London.

But what actually is EDS? Well I’m no expert and there are at least six different forms of EDS of which I have type 3 – the hypermobility form. Essentially, it is a currently incurable hereditary condition in which the collagen in the body is too stretchy resulting in loose ligaments in the joints which causes a great deal of pain as well as subluxations (partial joint dislocation) and full dislocations of the joints. The condition itself has many other symptoms, most of which I still find hard to comprehend how they relate to my genetic condition such as clumsiness, insomnia and constant fatigue. There is a wide spectrum of disability ranging from minor pain to constant dislocation needing the use of a wheelchair.

What’s my point? To raise awareness. Such little is known about this condition in the UK to the extent that many doctors are unaware of it – hence it taking 9 years for me to be diagnosed with a condition I was born with. I attend a monthly support group in London as there is simply no support network closer to home in Birmingham, however, in doing so I have met some amazing and inspirational people from all over England that share this rare condition with me and although the train journey is quite debilitating I find the support from my friends in the group invaluable.

Although my condition affects my day to day life, I am still able to live life to the full – even if some compromises have to be made. I am studying my A levels and hope to go to University; I have a weekend job and have the support of family and friends. Not letting my condition get the better of me as it’s all about management and getting the right balance – then nothing can stop you achieving your goals.

I have no doubt that there are other EDS sufferers out there that are yet to be correctly diagnosed and are currently in the emotional turmoil that I was in for a number of years because of such little
awareness about the condition.

When I was told last year that I would have EDS for the rest of my life and how much it would affect me I was in complete shock but I am currently controlling it and can honestly say I was just so relieved to receive a diagnosis so I can now concentrate on my future.

It took 9 years for me to be diagnosed with a condition that affected me greatly, a condition I was born with. That’s why I am trying to raise awareness about Ehlers Danlos Syndrome and hypermobility.

For more information about the condition please visit my invisible disability blog: www.hideandseekdisabilities.blogspot.com

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