I have a rare disease which means my bones dislocate 20 times a day
Sometimes my hip pops out mid-sex
Imagine dislocating 10 bones before you’ve even got out of bed and having a life expectancy of 40 years. For Darcey Kelly, this is her life.
The fresher has Vascular Ehlers-Danlos syndrome (VEDS), a condition which mutates the collagen – the glue which holds your body together – so it’s really relaxed and loose, and can tear apart easily. It’s hereditary but incredibly rare: her family have a different strain which results in hyper mobility. Her sister is a circus performer and has just just broken the world record for the furthest distance shooting a balloon using her feet, while her brother is a stuntman.
VEDS inhibits her day-to-day life, where on a good day she still has six dislocations. She told The Tab: “On a bad day I can’t get out of bed because I’ve dislocated like 10 things getting out of bed; on a good day I might get six dislocations. The other day I was trying to get out of bed and my hip came out, so then I fell over and my shoulder came out.”
The English student has been forced to get used to the frequency of her dislocations, and even on the way to meet me she dislocated her ankle. She said people were a bit confused because her ankle was at a 90 degree angle to her leg, and then when rolling it back in she popped out her little finger.
She goes on to explain how she manages some DIY nursing, telling me: “There are certain joints I can’t do anything about, so like my ribs I have to wait to sort themselves out and my jaw results in me passing out. Each time it happens it feels like you’re breaking a bone each time, and when they put it back it and they’re setting it it’s even more painful. It feels like you’re breaking a bone 20 times a day.”
University started badly for the Hertforshire-born student, who tells me how she got assaulted outside a club in Freshers’ Week. “I couldn’t find my friends so walked towards the bus stop on my way back to Ramsay Halls. I was passing an alley way when I got thrown to the ground and stamped on, and then someone found me and took me to hospital and I had wires coming out of every part of me. My ribs had come out, my shoulder had come out, my jaw came out, everything came out. And then I couldn’t scream or anything because of my jaw so I had to just lie there and take it. At the start term I looked like I’d been run over by a truck.”
I’m struck by Darcey’s positivity, even managing to smile as she tells me her life expectancy is limited to between 35 and 40: “I don’t really listen to that – you get told you’ll be in a wheelchair by 18 but I’m still strolling around absolutely fine…ish.” Her positivity is inspiring, and she laughs through countless anecdotes of her dislocations and toils, claiming she has to laugh because it’s “a really ridiculous situation”. She added: “There was a time I was telling my friends about how I dislocated something and I was laughing so hard about it that I dislocated my jaw. You have to take the piss, it’s so much easier.”
Simple things we take for granted are much harder for Darcey, and she explains she has to be extra careful when partaking in classic university activities. She has to wear compression clothing when she drinks to try and prevent anything from popping out, as well as when she plays sport. Bravely, she’s been doing Muay Thai for the past eight years, and didn’t want to stop following her diagnosis two years ago. On top of that, sex brings with it challenges most of us would consider disastrous. She said: “It can have an awkward moment say if my hip pops out mid sex and I’m like erm, oops. I usually laugh and the guy thinks he’s done something wrong but really it’s because I dislocated an elbow or some shit.”
In yet another inspiring quip, she considers how she was “the best person for it to happen to”, because she’s “so used to it and on morphine all the time”. As if that wasn’t bad enough, she’s also “getting a general anaesthetic once every three weeks which ruins me for the next week or so which is really, really tough. I get taken off in an ambulance about once every two weeks.” Her particular strain of EDS is very rare, but her experiences are nothing short of incredible, and her attitude personifies positivity. She finishes by laughing about a time she was on a rollercoaster at Thorpe Park and she dislocated her jaw: “Everyone just thought I’d had a really good time.”