E66 - Don't go Water Skiing: EDS - The Hidden World of Women

May is Ehlers-Danlos Syndorme (EDS) and Hypermobility Spectrum Disorders (HSD) Awareness Month. During this month, people worldwide show their support for those with complex, multisystemic conditions. The awareness ribbon is black and white zebra striped pattern and zebra are used throughout the awareness campaign with phrases like #dazzletogether (a group of zebras is call a dazzle which I did not know and I LOVE!).

In this episode Emma speaks with Phillipa about what it is like to live with EDS and include discussion on why people with EDS are called zebras, at Med school doctors are taught that if you hear hoof beats think horses not zebras (why there is a horse in a hospital only John Mulaney knows apparently 😊) but the saying is supposed to encourage med students to look for the most obvious cause rather than jumping to the obscure and unlikely but guess what, sometimes those hoof beats are zebras and sometimes the diagnosis is the rare and complex condition like EDS – although Emma and Phillipa do questions just how rare EDS actually is!

It wouldn’t be a Hidden World of Women episode without tangents and the odd soapbox thrown in here an there, Emma and Phillipa discuss mobility aides and I am reminded of the meme that says that ‘people who don’t need mobility aides don’t fantasize about having one’, the importance of finding community and surrounding yourself with people who can show kindness, empathy and compassion and the need to advocate for yourself. We encourage you to be your own advocate and listen to your body because more often than people realise, there’s a zebra in the hospital too!

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