EDS Event.

Monday 27 May 2013

Ehlers Danlos Syndrome (EDS) is a genetic connective tissue disorder that affects collagen proteins in the body making them defective. There are six different types of EDS, but i have type 3, Hypermobility. Collagen, to put it simply is more or less the glue that holds our body together, and it is found in tendons, ligaments, cartilage, skin, bone, the gut and spine. With having EDS Type 3, my life is very difficult. I suffer badly from fatigue, i bruise very easily, and in other words i'm just quite fragile. I'm lucky that i've only ever had one dislocation, but something i have to be aware of is the fact that my joints are likely to dislocate due to this. The only good thing about EDS is that i'm blessed with soft velvety skin and i don't even moisturise! I'm also in constant pain. I have to see an Occupational Therapist, a Physio and i'm on the waiting list to see a Stomach Specialist and a Health Psychologist. Ehlers Danlos Syndrome is known as a rare condition and therefore having this condition makes me a medical zebra. There is no cure for this condition, just management. There is a lot more to it than just what i've said so if you would like to know anymore, feel free to tweet me. You can find out more about EDS here.

On Saturday i went to my first EDS event, which was a Spring Family Fete held in Watford. I got to meet others suffering with the same illness. Here are a few photos from the event.

DSCF9878 DSCF9877 DSCF9881 DSCF9883 DSCF9884 DSCF9906 DSCF9898 DSCF9899 DSCF9911 DSCF9912
EDS poster, me with the EDS car, EDS cushions made by SignIt, me with a fellow bendy Melville named Sam, Stacey and I, Emergency Alert card, my zebra EDS bracelet, management of EDS book, front of EDS top, back of EDS top.

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1 comment:

Anonymous said...

I tried commenting last night but it wouldn't let me, whoops. Anyways, I think it's great that you're posting abbout EDS on your blog - it's not made public enough and it's great that you're raising awareness, it must be a tough syndrome to live with :) x

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