Ehlers-Danlos Syndrome and George

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It’s a bit of a longer video today, where I’m talking about George and his diagnosis of Ehlers-Danlos Syndrome (EDS). It is quite difficult to get a diagnosis of EDS as not many doctors know much about it at all, and some even deny its existence. I’d never heard of it until about a year before George was diagnosed with it and there’s still so much to do to raise awareness of it. I’m not an expert, and I don’t pretend to be, but I try and explain what EDS is. I’ll also explain why George’s chair is such a godsend to all of us.

It was quite the journey to get the diagnosis as I had 10 years of being fobbed off with, “He’ll grow out of it.” In the video I mostly talk about how EDS affects his legs but it doesn’t just affect his legs. It affects his ability to write properly ,as he is unable to hold a pen properly and writing causes him pain. He does some handwriting at school, but mostly he uses a laptop to produce his work, which is then printed out. It also affects him in a number of other ways and I’ll mention some, but not all, of those below as I don’t want this blog to become a great long essay.

As seems to be typical with a lot of people with EDS, George has soft, velvety skin that bruises easily, and he has stretch marks down his back and on his legs. He also has digestive problems, which are exacerbated by the cold.

A common co-morbid condition that goes with EDS is Postural Orthostatic Tachycardia Syndrome (POTS), which is something George was also diagnosed with when he was diagnosed with EDS.  Fortunately, so far, it hasn’t caused any major problems for George, although it has caused some alarm on occasions at school.

George has a “shopping list” of issues but the ones that cause the most problems for him, given in the order of diagnosis, are dyspraxia, autism and EDS. However, his disabilities and diagnoses do not define him. He is a wonderful kind, caring and loving boy, and is a joy to be around.