My story – Delta
My name is Delta, I’m 21 and my pronouns are He/Him and I’ve just graduated university with a degree in Journalism. However this hasn’t been easy!
I’ve been struggling with joint pain and soreness for as long as I can remember. The earliest I remember is around the age of 8 or 9 and I started getting ankle pain when walking. My doctor at the time labelled this as growing pain due to my age and I was told that things would resolve with age, and sadly, it didn’t.
I noticed that my shoulders would make the most awful cracking sound when I lifted my arms, it felt almost like my shoulder went out of the socket and back in it again. (I now know this is subluxation!) When I hit my teens I was offered physiotherapy however this didn’t make a difference and caused me much more pain.
After speaking to another doctor, I managed to get a referral into see someone in paediatrics about my joint pain. I had done some research around hEDS and I mentioned it to the person looking over me who said that “There was no signs indicating EDS.”
After this experience, I didn’t see a doctor again for a long time! However looking back, I wish I would have fought my case! I’m so lucky that I found EDS UK which was a great resource tool for me in terms of finding Facebook groups and understanding exactly what Ehlers Danlos Syndrome was.
When I got to university, I began to struggle more with my mobility and fatigue. Dislocations and subluxations began to happen more often and it was becoming hard to deal with. Initially, it was put down to my mental health and other external factors. However, one doctor was willing to listen to me and agreed that hEDS was possible due to the symptoms and the range of my flexibility. I scored 9/9 on the Beighton score and it was decided then I needed to see a rheumatologist. The wait on the NHS was expected to be at least a year, if not more. So with help from my family, I was able to see someone sooner who had experience with Ehlers Danlos Syndromes. If it wasn’t for that, I wouldn’t have my diagnosis today.
I was diagnosed with hEDS in Feburary 2024, after nearly 10 years of fighting for a diagnosis. I’m extremely lucky that I was listened to and I am now receiving care to help make sure that my condition stays at a manageable level! I really think the NHS need more training around Ehlers Danlos Syndromes, especially in Paediatrics. I hope that in the future there will be less people ignored or turned away! Think zebras, not horses!