I have Ehlers Danlos Syndrome (amongst other diagnoses) but EDS is my primary issue. I was interning for a paper in 2012 when I interviewed a girl with EDS. Something stuck with me after speaking to her and I became widely passionate about raising awareness of EDS. A year later I did a follow up story and when I was telling this woman about my own health issues she asked me one question that changed my life forever “Are you hypermobile?” At that point I was 26 years old and as far as I was aware, I was stiff as a board. Low and behold I scored 8/9 on the hypermobility scale and the rest is history.
How does your condition affect you on a daily basis?
I am in pain every single day. If I’m not in pain I’m fatigued or feeling awful because of my Postural Orthostatic Tachycardia Syndrome. There is always something wrong with me.
Do you have any tips for someone who is newly diagnosed?
Get yourself a good GP who’s interested in learning and helping you. Doctors with egos are no help at all. Get an EDS aware physio to give you an exercise plan, strength training can help a great deal. Learn to pace yourself and don’t give up when you’re exhausted, sit down before you get to the point of exhaustion. Take note of how many things you can do while you’re still feeling OK.
What is one thing you would like people to remember about your condition?
It’s multi systemic so everything system in the body is affected. It’s not just a joint issue. Also, there is no cure and no amount of dieting or homeopathy is going to change that.