2nd May, The Long Road to Diagnosis, part 1

On 4th April 2015, my mum and I travelled down to London for an appointment at the Hypermobility Clinic at UCLH. The appointment was with Dr Nicola Ambrose and, after about 10 minutes of talking to us and running through my Beighton score, she gave me the diagnosis I had been waiting for for nearly a decade: I have EDS.

I was always active as a child but as I grew I began getting tired easily and often had sore joints. If I brought this up with any doctors I was always told ‘it’s just growing pains’ or ‘you’ll grow out of it’. It wasn’t until I was having problems with my knees aged 11 that I started being believed. At this stage I was sent to a physio and told that I was hypermobile but that it was nothing to worry about, so I never even considered this could be the cause of all my health issues.

For the next few years I continued suffering with fatigue and would regularly injure myself, this was when EDS started impacting my day-to-day life. I would injure myself in unusual ways and the most common injury was dislocation. I dislocated my toe through stubbing it, my finger (in all three joints at once) catching a ball, one shoulder doing a break-fall when I tripped, and the other shoulder doing a gymnastics routine (ok, that one isn’t that weird a thing to cause a dislocation). I also broke my scaphoid falling up (yes, up!) the stairs. Even after all these injuries I was told there was nothing wrong with me; the fatigue was puberty and I was accident prone.

When I was 13 I was diagnosed with Chronic Idiopathic Uticaria (basically, I’m allergic to myself), but it wasn’t until Easter 2010, when I was 15, that my health started deteriorating really quickly.


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