What we wish you knew about EDS & HSD #EDSAwarenessMonth

Added: 2026-05-28

[00:00:00]What we wish you knew about Ehlers-Danlos syndrome and hypermobility spectrum disorder this EDS and HSD awareness month. One, it's not just being bendy. EDS and HSD are connective tissue disorders and connective tissue is the basically the glue that holds everything in your body together, meaning that EDS and HSD can affect your whole body. Joints, skin, organs, digestion, cardiovascular system and more. Two, it looks different for everyone. Some people need mobility aids and some don't and both are valid. Some people are in constant pain and others experience a variety of different symptoms. But there are 13 different types of EDS and even within the same diagnosis no two people are the same.

[00:00:36]Three, HSD is not less than hEDS.

[00:00:40]Hypermobility spectrum disorder isn't just a milder or less important version of hypermobile EDS. It can be just as painful, just as complex and just as disabling. The label doesn't define the impact. Four, 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 and many people are dismissed, gaslit or told nothing's wrong. Even after diagnosis specialist support is limited and many health care professionals still aren't properly trained on the conditions.

[00:01:09]Five, it's painful and exhausting.

[00:01:11]There's no cure, limited treatment options and still not enough research.

[00:01:15]It's often misunderstood, downplayed or underestimated and trying to function in a body that's constantly struggling to hold itself together is exhausting. What would you like to add to the list? Let me know in the comments. Please make sure to share this video to continue to help raise awareness.