My EDS Challenge Day 23- Hopes for EDS/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.

Day 23: My hopes for EDS/HSD

My number one hope is in my lifetime, they will know more genes responsible for hEDS and HSD. The society has gotten a lot of funding and education is out there. However we really need progress in whole genome sequencing research as a whole. We need a new standard procedure for diagnosis of rare diseases, not just EDS and HSD. This can only be done if we know which genes are resposible for the less severe types, and it may be different for everyone.

Another hope is that someday testing is included in early childhood so that the possibility for developing symptoms is on everyones radar as well as management for said symptoms. No child should have to live with pain they cant verbalize.

I also wish that imposter symdrome wasnt a thing. Not having the vocabulary or the tests to “prove” our symptoms and pain is devastating. Imposter syndrome is knowing that logically theres a legitimate reason for they symptoms and that EDS/HSD is indeed a thing, but still thinking you’re crazy or perhaps even believe that this cant be real, it has to be some fake sick joke. We live in a world where we are questioned by doctors and people in our lives everyday. And until people start focusing on less common diseases more so, we will be stuck in imposter syndrome rut. On bad mental days, its hard having the confidence to fight both the internal and external battle.

And lastly I hope that when I say the word collagen, people understand how important it is to the body, just like they learn organs and body systems. I hope that medical professionals will have more than 1 slide in medical school. People also need more language to describe pain and body parts without shame or embarassment. Collagen is not just joints. its the glue that holds our bodies together. It makes up skin, gums, vessels, your ears/inner ear/ and it provides padding for in between your organs so they dont mash onto eachother inappropriately.

Last updated May 24, 2021