My story – Layla
It took about 7 years to be diagnosed with hypermobile Ehlers-Danlos syndrome. I was finally diagnosed in 2022 after 2 years of my symptoms being worse and developing multiple comorbidities like PoTS, urinary and gastric problems. I had to fight to get my diagnosis due to an incompetent paediatrician and rheumatologist who said I had no connective tissue disorders. However, after a week hospital stay ordered by the paediatrician so I could see multiple consultants, an adult rheumatologist conducted the Beighton score with me and heard my symptoms going on to diagnose me. During this time my symptoms were greatly impacting my education with my attendance being 40% which was critical as I was in my year 11 and due to sit my GCSEs which I later managed to do at home.
During the next two years with my diagnosis, I have gone on to see specialists for my comorbidities and started treatments. I have also seen the likes of orthotics and been given aids. I have also had the confidence to become an ambulatory wheelchair user and been given a power assisted chair which greatly helps my mobility and energy conservation which has allowed me to increase my attendance at 6th form to 60% and have sat my A-Levels.