My name is Sophie, I am a 22-year-old accountant in training from South Wales.

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My chronic illness story began at the age of 14. I have a condition called Ehlers-Danlos syndrome (EDS) which is a genetic connective tissue disorder which causes dislocations, joint pain, and fatigue. I also have a condition called Postural Orthostatic Tachycardia Syndrome, or as it’s commonly known as (POTS). I developed this at the age of 14 and I went from being an energetic and active teenager to not being able to walk or stand and became fully dependent on a wheelchair.

During this time, I struggled through my GCSE exams and left school after year 11. At this point, I considered studying AAT as it was something that I could achieve from home. However, I felt in order for me to go to university one day I would need to complete my A Levels. Over time I improved, and I decided to attempt my A Levels and somehow, I managed to pass my exams and get into my first choice university to study Biomedical Science.

In 2015, I moved into my student flat and it was one of the first times I felt independent. I tried so hard to "live a normal life" and pretend that I wasn't “disabled.” But the longer I stayed in university, the more unwell I became. I made the decision to leave after the first year, as my body just could not cope and the lab work became painful and exhausting. I decided to re-think my career path and that’s when I reconsidered accounting. I was lucky enough to be able to attend college and while my EDS/POTS is still a constant and daily battle that I’m learning to live with. I am currently dealing with constant pain, subluxation (partial dislocations), and incredibly debilitating fatigue alongside many other systemic symptoms.


My passion and something I feel very strongly, about is the lack of accessibility in education for children and young people with disabilities and long-term conditions. I personally, found it quite difficult to gain support from professionals regarding my education and it opened my eyes to the inequality, and I am sure I am not the only one.

I am also working for a supportive employer within the education sector, and for the first time, I am confident that I will be able to cope with the future. I've learned not to be ashamed of my disability but rather be grateful for how much I have achieved.



Love,

Sophie xxx