This May I am participating in Dazzle Walk 2025 to raise money for The Ehlers-Danlos Support UK.

1st May 2025 I will be attempting Long Meg and Her Daughters Circular in the Lakes.

My story:

I was diagnosed with Hypermobile Ehlers Danlos Syndrome in 2021. I faced frequent injuries in my feet as a teenager, with no real input from my doctors at the time. In 2020 I suffered a seizure which resulted in me landing on my shoulder causing a fracture and dislocation. Orthopaedic surgeons performed routine manipulation, with a 90% success rate. The following week I returned, and was informed the procedure didn’t hold. Ortho surgery was then carried out, with a low failure rate. My recovery was halted due to my shoulder physically being stuck, after advocating that something wasn’t right they found that my rotator cuff had slipped. This meant I was bone on bone, and tendons had moved causing permanent damage.

After routine surgery didn’t go to plan, I raised with my GP the issues I faced throughout my life. I was then referred for an assessment with Rheumatology, who on examination, medical history and review of ortho notes confirmed Heds.

There is still no pathway for treatment for this condition, and I get by using LDN as my only pain relief after all others failed. I heavily rely on strength training, and have a brilliant PT who supports me with this.