エム・フォードさんのインスタグラム写真 - (エム・フォードInstagram)「Ehlers Danlos Syndrome. ⠀ To answer the thousands of questions - Ehlers Danlos Syndrome is what’s wrong with me. Today is #RareDiseaseDay, and I wanted to take a moment to shine a light on EDS and hypermobility spectrum disorders and how severely they can impact lives. ⠀ It actually took 9 years from my first trip to the emergency room to finally receiving my diagnosis. ⠀ So what is it? ⠀ Essentially, my joints are too flexible and stretchy which causes me constant pain. It also means that my joints frequently come out of place. I can dislocate my shoulder in my sleep, or for example, when I get up from the sofa I can feel (and hear) joints in my hip and feet partially dislocating and popping back into my place. ⠀ My skin is overly stretchy, bruises easily, is often translucent. My nails are overly flexible and bendy, hell even my hair is delicate. ⠀ My muscles also need to work harder than the average persons just to keep my joints working properly - even when I’m standing still, meaning I get tired out a lot quicker on basic tasks like walking up the stairs, than you or anyone else. ⠀ EDS is being able to do something one day, but finding the same task, such as washing and drying your hair or climbing the stairs, almost impossible the next. It’s cruel, frustrating and a constant battle against your own body. ⠀ And the fun doesn’t just stop there, oh no. The thing about EDS is, it runs like a constant grocery store ‘buy 1, get 1 free’ promotion. Because I’ve learnt that it’s never usually on it’s own. EDS often comes with a side order of additional diagnoses such as postural tachycardia syndrome, dysautonomia, GI issues, anxiety and many more. Connective tissue affects EVERYTHING. ⠀ Having lurked and secretly read what felt like every hypermobility and #EhlersDanlosSyndrome hashtag on Twitter and insta for the past few years, I finally feel ready to talk about these things, and to open up the discussion on invisible disabilities a little more. ⠀ So hello, I’m Em, and I have Ehlers Danlos Syndrome, nice to meet you 🦓. ⠀ For more information about EDS check out @ehlers.danlos @ehlersdanlosuk #eds #hypermobility」2月28日 22時53分