MY EDS Challenge Day 2- My type of EDS or HSD in Hypermobile Life

I am taking part in #MyEDSChallenge and #MyHSDChallenge with the Ehlers Danlos Society. Since May is EDS awareness month, every day I will be sharing something about myself and my EDS journey to drive further awareness and community.

My type is Hypermobility Spectrum Disorder (HSD).. This means I have some joint hypermobility but I do not meet a portion of the physical criteria for a hypermobile Ehlers Danlos syndrome (hEDS) diagnosis. I have musculoskeletal involvement and a bunch of other symptoms and co morbidities that are involved in Ehlers Danlos syndrome. Some people think that HSD and hypermobile EDS (hEDS) are one in the same, and on a spectrum and I happen to agree. We are moving into the future of genetic research on Ehlers Danlos syndrome and my prediction is that hEDS and HSD will yield many more genetic types once the research progresses into the future. I am waiting for the day there is more genetic testing available and I can be vindicated.

There are many labels you can use for someone on the hypermobile spectrum. 20% of the general population is hypermobile and said to have benign joint hypermobility. People who have HSD are not part of this group, although they are hypermobile. Since connective tissue is located everywhere in the body, we have many invisible symptoms with varying severity. This includes gastrointestinal issues, autonomic nervous system issues, and mast cell issues. The above white table shows the variety of labels that exist and their characteristics. Many people think these labels don’t “really” matter. They just want treatment for their symptoms. For some folks a label is a cage that limits them. But for many, a label means freedom. I am part of the later group. Having a label has givin me peace of mind, a reason for my suffering, access to accommodations, access to benefits etc. It has given me the language to describe my condition after years of searching, trial and error, and heartache.