@chronicallyjenni: What we wish you knew about Ehlers Danlos Syndrome & Hypermobility Spectrum Disorder this EDS & HSD awareness month A little reminder that this series is community led. I asked people with EDS & HSD in my stories what they wished others understood about these conditions, then brought those responses together into this “What We Wish You Knew” video. 1. It’s not just being ‘bendy’ EDS and HSD are connective tissue disorders. Connective tissue is basically the glue that holds everything in your body together meaning that EDS & HSD can affect the whole body. Joints, skin, organs, digestion, cardiovascular system and more. They are multisystemic conditions. 2. It looks different for everyone Some people need mobility aids, some don’t, and both are valid. Some people are in constant pain, others experience different symptoms. There are 13 subtypes of EDS, and even within the same diagnosis, no two people are the same. 3. HSD is not ‘less than’ hEDS Hypermobility Spectrum Disorder isn’t a milder or less important version of hEDS. It can be just as painful, just as complex, and just as disabling. The label doesn’t define the impact. 4. Getting diagnosed and supported is difficult and takes a long time. On average, it can take around 10 to 12 years to get a diagnosis. Many people are dismissed, gaslit, or told nothing is wrong. Even after diagnosis, specialist support is limited, and many healthcare professionals still aren’t properly trained on the conditions. 5. It’s painful and exhausting There’s no cure, limited treatment options, and not enough research. It’s often misunderstood, downplayed, or underestimated. And trying to function in a body that feels like it’s constantly struggling to hold itself together is exhausting. What would you add to the list let me know in the comments. And what have you learnt about EDS & HSD this awareness month. Please share this video to continue to help raise awareness. #EhlersDanlosSyndrome #EDS #HSD #EDSAwarenessMonth

Chronically Jenni

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Friday 22 May 2026 18:33:30 GMT