DAILY LIVING & MOBILITY

Challenging the idea of what a disability 'looks' like

Rare Disease & Syndrome

Ruby Jones

How Ehlers Danlos Syndrome Affects Me

My name is Ruby and I am 21 years old. I was diagnosed with Ehlers Danlos Syndrome in 2012 after suffering from unexplained, widespread chronic pain. Since then I have battled with my condition to get it under control, and I have experienced many other issues along the way. Physically, my condition causes chronic pain in my joints. It also causes dislocations, fatigue and I have to take strong medication that can wipe me out completely. My Ehlers Danlos Syndrome has caused many psychological problems, and in 2014, I was hospitalised for severe Anorexia.

Raising Awareness for Ehlers Danlos Syndrome & Chronic Illness

Whilst battling all of these issues, I still managed to achieve two A*’s and an A grade in my A Levels, and I am now in my second year of University, studying English Literature. Despite Ehlers Danlos Syndrome being incredibly unheard of and misdiagnosed – along with judgemental stares for being in my wheelchair one day, and walking the next – I continue to raise awareness for this chronic disease. I am hoping to become a Journalist but I also have a huge interest in makeup, and I love challenging the stereotype around what disability ‘looks’ like. I want people to know that disabled people are beautiful and strong and can do whatever the hell they want.

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