My name is Claire, and I’m a twenty seven year old para figure skater from North Yorkshire.
My EDS journey began when I was diagnosed as autistic (Autism Spectrum Disorder (ASD)) at the age of eighteen. Hitting that age also made me realise that what I experienced every day couldn’t possibly be put down to growing pains any more.
I had suffered from lots of what I thought were minor mental and physical health issues throughout my life. But every symptom or ailment I saw a GP a specialist for was treated as a separate issue, and no one ever looked at my health holistically or joined the dots. Instead, because I went so often and with so many different problems, my GP misdiagnosed me as having health anxiety.
However, my health continued to deteriorate as I went through university, and I found myself being able to do less and less and suffering more. During this time, I began receiving therapy from an autism-specific counsellor, who happened to have an autistic son with EDS. She was able to connect the various issues I was raising with her, and she gently suggested I did some reading on with my family to see if any of it resonated. It absolutely did.
I passed this on to my GP, who referred me to a rheumatologist – only for them to misdiagnose me with the Benign joint hypermobility syndrome, and send me home with a leaflet an a physiotherapy referral. The NHS physiotherapist told me my condition was lifelong and incurable, that she couldn’t help me, and that I just needed to work out how best to manage it myself, through trial and error. This sounded dangerous to me.
In 2020, I graduated from the University of Leeds with a degree in Geological science. But at the same time, a new medication I was taking for my symptoms, and a mental breakdown I suffered, caused me to gain 7st. This inevitably exacerbated my physical symptoms, and I had to abandon plans to get a job or do further education/research. It all meant that I was forced to finally address my health problems once and for all.
Out of desperation and while googling EDS, my family and I came across the EDS Support UK website and helpline, which put us in touch with the lovely and highly knowledgeable Lisa Backhouse, Area Coordinator for Yorkshire at the time. She suggested I got a referral to see Anna Higo at Physiocure in Leeds. This was exactly what I needed – Anna was able to assess and refer me on to a geneticist (Dr Brennan) and cardiologist (Dr Gupta) privately, who subsequently diagnosed me with hEDS, MCAS and PoTS respectively in May 2023. I finally had the right diagnosis.
After months of struggling to get my head around the symptoms and the fact that the loss of certain abilities could be lifelong and sometimes progressive, I thought of something that I could still do on my good days: skating. And there was something positive that I had gained through my diagnoses – I was now eligible for parasport.
So I joined Inclusive Skating, the skating body that enables disabled skaters to compete on a level playing field. The rest, as they say, is history, and I am now a two-time world champion!
My competitive career results in inclusive skating so far are: Virtual World Championships 2023: gold and silver in Senior Ladies Level 3; In-person World Championships London 2024: gold and bronze in Senior Ladies Level 3; and Virtual World Championships 2024: gold, gold and silver in Senior Ladies Level 4.
I train twice weekly when I’m able, and training is the highlight of my week. I’m lucky to have a brilliant coach who has learnt about and adapted to my diagnoses as I’ve acquired them. I also continue to have regular physiotherapy with Anna at Physiocure, which enables me to continue to skate and compete.
I hope my story shows that skating is for everyone, and it inspires others with EDS to try parasport.
Instagram:
clare_para_ice_skates