A diagnosis of Ehlers-Danlos Syndromes (EDS) or Hypermobility Spectrum Disorder (HSD) is not just a label. It is validation, credibility, and often the key to accessing proper care. On last week’s episode of Bendy Bodies, I talked with Lara Bloom, CEO of The Ehlers-Danlos Society, about why naming and classification matter deeply for people living with these conditions. Scientists may see terminology as a technical choice, but for patients with EDS and HSD, the name determines whether their symp
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"Learning to accept yourself is the biggest gift you can give to yourself 🫶🏾 Living and growing up with a connective tissue disorder (Ehlers-Danlos syndrome) that you did not choose to have can do a number on you. Where people stare at the scars on your legs. Where people ask numerous questions trying to do the math. Where bullying was a constant challenge throughout your childhood because you looked different. Where the guilt is so strong because you feel like you are a burden to your family.
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Eccles, J. A., et al. (2012). Brain structure and joint hypermobility: relevance to the expression of psychiatric symptoms. The British Journal of Psychiatry. Eccles, J. A., et al. (2014–2024 related work). Research on hypermobility, anxiety, and limbic brain connectivity. Schubert-Hjalmarsson, E., et al. (2023). Central sensitization in adolescents with hypermobility spectrum disorder or hypermobile Ehlers-Danlos syndrome. #hypermobility #heds #neuroscience #fyp
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