I’m glad to have answers

Posted March 9, 2022

young teenage girl sitting in her wheelchair smiling next to a Christmas tree on a hospital inpatient ward.⁠

I had my first shoulder dislocation at age 12 and my first knee dislocation; I now have about ten a day! Growing up I was naturally flexible and didn’t have to stretch like everyone else at gymnastics, dance, and cheerleading but little did I know this was not a good thing. ⁠

From a young age, I would have severe growing pains, feel cold in 40 degrees celsius heat and vice versa, and feel dizzy. I started getting random pains that would come and go but we all thought it was just normal until at 16 I saw a hip surgeon for severe pain I was having. ⁠

Upon examination, he suspected Ehlers-Danlos syndrome (EDS). Whilst I waited for surgery for hip dysplasia I saw a rheumatologist who diagnosed me with hypermobile EDS (hEDS) and an amazing gastroenterologist who diagnosed me with gastroparesis and intestinal motility and managed to keep me stable for a couple of months before needing to be placed on a feeding tube. ⁠

Since then I have been diagnosed with POTS, mast cell activation syndrome (MCAS), and although we still don’t know everything that is going on inside my body I am so thankful for that surgeon who informed us of EDS. If it wasn’t for him I would still be searching for answers!

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