EDS: What It Is & How It Affects Me

Poppy

I have a condition called Ehlers-Danlos Syndrome - or EDS for short as, let's be honest, the full shabang is a bit of a mouthful.  EDS is a genetic connective tissue disorder which affects the whole body, inside and out. We all have collagen in our bodies which is basically the 'glue' which holds everything together - skin, joints, muscles, ligaments, organs, etc. Most people have normal collagen so their bodies work all fine and dandy, but people with EDS were born with a genetic mutation (not like a mutant alien though I swear - you can't prove anything!) & this causes our collagen to be faulty. So in proper medical terms, my body is shit at doing what it should be able to do. There are 7 different types of EDS and I have type 6, also called kyphoscoliotic type.  The different types have different symptoms, but no two people with EDS are affected the same, even if they do have the same type.  There can also be crossovers of the different types too and not everyone has every symptom that comes with it. So with my type, one of the main symptoms listed is kyphoscoliosis of the spine (major curvature basically), however I don't actually have this!

My skin's stretchier than most people's & is prone to tearing, bruising, scarring & bleeding for longer.

I'm at risk of retinal detachment, aortic aneurysms and my blood vessels & arteries rupturing (I know it sounds dodgy but don't worry I'm sure I'm all good man).

My joints & muscles are affected the worst. My joints are hypermobile, which means they bend back further than they should. My shoulders have dislocated numerous times, I spent a couple of years popping my coccyx back into place every time I sat down & now I click my hips into place every morning before I get up! I'm also super floppy, which coincidentally works really well with my name being Poppy. Floppy Poppy, get it? Anyway yeah I'm basically weaker than Mr Burns from The Simpsons haha. I'll never be able to wear a pair of high heels, go ice skating, or run away from a crazed axe murderer. But I do have an electric wheelchair, so I could definitely have a go at running the crazed axe murderer over with my wheels.

I thought I'd share this because it's only been in the past couple of years I've actually been comfortable telling people that I'm disabled. I'm 23 and I've finally accepted that it's not embarrassing, it's just a medical condition I happen to have. So I might aswell let others know about it too!

PS if there's anything you wanna ask about it, don't feel like you can't! The whole point of raising awareness is to let people know about it! 

Poppy's Instagram: poppyakinola

Poppy's Twitter: poppyakinola

Holly Gouldthorpe