Hello and welcome to the monthly EDS Awareness newsletter, Funny Bones. Karina asked me to write the introduction for this edition and at first I struggled - how could I sum up the condition that affects so many of us from a young age, but often goes undiagnosed for years? Then I realised that with last month (as I write this), May, being EDS Awareness Month, I should talk about what that means to me (and likely to you too). I wasn’t aware of what EDS was when I was late to walk as an infant, or when I first got symptoms of pain that kept me awake at night when I was a pre-teen. I wasn’t aware of it when I kept falling over in school sports because of my wonky hips, and nor was the physiotherapist who was baffled by how tight my muscles were. I went back and forth to doctors for fifteen years, being told it was everything from juvenile arthritis to growing pains, and it was only by chance that I read about EDS on Kaliya Franklin’s website one day and everything started falling into place. I was finally diagnosed at the age of 29, eighteen years after first going to a doctor with symptoms. Since then I’ve noticed the discrepancies between medical professionals who know about EDS and who don’t, or who think they do but don’t. It’s clear to me now that when we talk about awareness we don’t just mean that people who are hypermobile may have EDS, we mean that we want doctors and therapists of all types to be familiar with it - which shouldn’t be a big ask considering it can affect everything from joints to hearing! If more doctors are well versed in how EDS presents and affects people, more of those people are likely to get diagnosed in good time, and be able to access appropriate treatment and management. 

And as for me? I’m “painfully” aware of EDS. Literally.

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TOPIC: “Beyond Allergies - Mast Cell Activation Diseases!”

PRESENTER: Anne Maitland, M.D., Ph.D.

Register HERE