Some of you will have read the About me page and learned a little about my journey. Others of you may have read one of my first posts sharing how the ‘Please Offer Me a Seat’ blue badge has impacted my life as a Londoner with Ehlers-Danlos. Today, to mark the end of Ehlers-Danlos awareness month, I wanted to take a deeper dive into my journey with EDS, starting at the beginning.
I was an unstoppable ball of energy from day one (not much has changed honestly). I was forever trying to trick my mum into thinking I had, in fact, had my afternoon nap (I used to mess up my hair and pretend to yawn lots) so I could keep playing. When I was 4, I broke my mum’s nose jumping out of a black taxi onto the pavement. I hunched down and “jumped like a kangaroo” out of the car… just as my mum was reaching down to help me out. I was always the only girl allowed to play with the boys at school because I was faster than most of them. No matter how many times I was told by adults, I just couldn’t manage to ‘slow down’ or ‘be careful’. This boundless energy meant that I very often ended up hurting myself and subsequently spent a good amount of time visiting A&E. My family actually used to joke that I was like Maggie from the Simpsons; As soon as I stood up, I fell over again.
Whenever I did take a tumble, it would always be the ankle/knee/shoulder/wrist that had taken the force when I fell that would be extremely painful. Without fail though, nothing was ever broken and I always told it was bad soft tissue damage, sprains, etc. and sent home. Doctors always noted my hypermobility but said I would grow out of it when I got older. At one point, a doctor who was treating me told my mum that I had been brought into the A&E by her or my teacher at least once a month for the last year – a new record he said.
When I was 6, I began having recurrent plantar fasciitis. Every time it would subside, I would return to school and it would be set off again. Eventually, my doctor began to question whether I was genuinely in pain. When we next visited, he grabbed my little foot and pulled out a HUGE needle. He told me that I would have to have steroid injections in my feet now because of the pain. I was terrified and I certainly didn’t want the injections, so I told him I that I was better and didn’t need the injections. It was at that time that I stopped telling people, particularly doctors when something hurt and began internalising my struggles.
I coasted through my next year’s pretty well. I still had problems; I was always catching bugs and infections, I got frequent sprains from seemingly nothing and I had constant pain for some unknown reason. Often my hypermobility would be noted by doctors but was ruled out as the ‘true’ cause. My mum stood by me through all of it. Eventually, the doctors started saying that it was in my head and that my mum shouldn’t indulge me anymore.
I began having more serious problems in my teens. Once I tripped over and when I stood up and my shoulder was intensely painful. I was late so rushed to class and tried to pull myself together. I tried hard to stop crying but I simply couldn’t and eventually, my teacher (who was a real ass) sent me out. I went to the nurse who quickly noticed my shoulder was dislocated and sent me to the local hospital. I had months in a sling, a lot of physio, and few steroid injections but they had marginal improvement. The shoulder continued to sit slightly dislocated at all times, despite the MRIs showing everything structurally was intact. The doctors just couldn’t understand, so they just discharged me.
My shoulder problems didn’t go away though and truly became the bane of my existence. It was only by pure chance one day that I happened to see a different doctor that happened to be my friend’s mum. She knew me from the times I had visited their house, but obviously, we had never discussed my medical history! She reviewed my notes going back to age 5 and realised something wasn’t right. She referred me for an urgent diagnostic surgery to assess my shoulder instability. They found abnormal muscle patterning and combined with other diagnostic criteria, Ehlers-Danlos Syndrome Hypermobile was confirmed. Finally, everything made sense. I wasn’t making it up and I could now receive the specialised care that I needed. It was such a huge relief after such a long journey with so many difficulties.
Unfortunately, my story is not unique. Due to the lack of knowledge about Ehlers-Danlos syndrome, combined with outdated medical views, this leads to a huge portion of people with Ehlers-Danlos syndrome going undiagnosed for years. It’s estimated that 1 in 5000 people have Ehlers-Danlos syndrome, though we don’t know the true number because of the lack of appropriate diagnosis. Those years of not receiving the correct treatment or the necessary guidance on things like how to avoid injury mean that we are doing irreparable damage to our bodies. By raising awareness we can help children with Ehlers-Danlos syndrome avoid unnecessary injury, we can help doctors learn what to look out for and ultimately we can improve the lives of people with Ehlers-Danlos.
You can learn more about Ehlers-Danlos UK here !
And please consider donating to Ehlers-Danlos UK and help them continue the amazing work they do!