This year I am running 3 different races.  You probably know about, and understand entirely, my reasons for running the other 2.  Lets face it, everyone knows someone who has been affected by cancer, everyone understands why cancer research needs more funding.

This run is different.  This time I'm running for a charity that you've probably never heard of, unless you've been stalking my facebook feed anyway.  I'm running for Ehlers-Danlos Support UK, and I'm doing it for 2 main reasons.

My first reason is that EDS is way more common than anyone realised when it was first described, perhaps as many as 1 in 100 people are affected in some way, although penetrance of the phenotype is variable.  Yet despite this fact, nobody knows what it is!  Even my doctor had to look it up in her book when I mentioned it!  What sort of medical help can you expect when the patient understands more than the doctor about the condition?

My second reason is that in all likelihood I have EDS.  So does my sister, and possibly so does my niece.  I've not had it confirmed yet, because despite a decade of working with doctors to determine the cause of my symptoms, not one of the medics I saw connected my list of ailments with EDS, and yet when you compare the symptoms, the match is pretty much perfect.  If I had known what I know now 10 years ago, I might not be in as bad a shape.  If I had known what I know now 30 years ago, I might still be working, dancing, walking, and enjoying a life with minimal pain.  

I'd like to help ensure that other people like me find out early enough to make a difference to their prognosis, and that means raising awareness.  I'd like to find ways to improve the quality of life for those of us for whom prevention is no longer an option, and that means research, which means raising funds.

I can still run, sometimes.  Slowly, and by that I mean unbelievably slowly!  I can't speed up, or my knees/hips/ankles start to dislocate, and whatever I do, I have to push through the pain.  But I'm willing to do that, to help others avoid this pain, or at least be believed when they report it, and receive the medication that they need.

If you can help, then I'd be incredibly grateful!

Thanks for taking the time to visit my JustGiving page.

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