I don’t know if a cure for EDS is possible. My hope is that we will find better ways to treat some of the systemic effects. One odd ray of hope coming out of COVID is that a huge number of people are having “long-COVID”, much of which is autonomic dysfunction of the kind that is widely prevalent in people with EDS (https://time.com/6051767/long-covid-19-rare-disease-pots/). Sadly, this kind of dysautonomia was either unknown, unrecognized, or (frankly) totally dismissed by a lot of doctors. One “silver lining” of COVID is that many of the people who were getting sick early were medical professionals and so doctors and other professionals are also over-represented in the long-COVID population, which means dysautonomia is finally being taken more seriously. This is due both to how widespread it is, but also because there’s a “believable” population reporting it. My geneticist and I actually spent several minutes of my diagnostic visit discussing this, and he was the one to bring up the “believable population” part. So, while I wish we weren’t having a pandemic of COVID and an epidemic of long-COVID, it is making me hopeful that more research will be done and better treatments and possibly even a cure. Treating those systemic aspects/co-morbidities of would make a huge difference in my daily quality of life.

I also hope the gene for hEDS is found, and I hope there can be some clarity for people diagnosed with “hypermobility spectrum disorder”, which is kind of the catch-all for people who don’t meet the strict hEDS criteria. It’s a very frustration place to be, because the pain, dislocations, systemic effects, and impact on quality of life can be indistinguishable from hEDS, but it’s often not taken as seriously. I feel like it’s the diagnosis for those who don’t meet hEDS criteria … and for those who aren’t able to see a geneticist to get diagnosed (i.e., no one knows enough to diagnose them). I was diagnosed with HSD 2 years ago because no one in my care system was qualified/informed enough to  say otherwise, and I had to push to get a referral to a geneticist. And I’m very privileged; I live in an urban area, I have outrageously good health insurance, and I was able to advocate for myself. I also have access to peer reviewed scientific literature through my employer, and I can read and understand much of it, which also put me in a better position to speak up for myself. So, my hope is that HSD is also given the respect it needs, or that we can understand HSD and hEDS are the same or overlapping conditions.

#hEDS

#EDS

#invisibleillness

#invisibledisability

#edsawareness

#ehlersdanlossyndrome

#ehlersdanlos

#hypermobilityspectrumdisorders