20-year wait for diagnosis

The EDS community is a huge one, living in pain, struggling to get diagnoses or help, and spaces like ethical true-life mag Lacuna Voices are essential for sharing stories like mine that deserve to be heard.

Ten years ago, it was almost impossible to place endometriosis stories in the mainstream media because editors didn’t want to hear about periods and gynae problems. Now it‘s covered all the time.

I wonder how things will look for hEDS stories 10 years from now.

In the mean time, thank God for independent publications that run topics that matter when they matter, not when the collective social conscience is fully aware of it.

Because of an article in Stat News quoting EDS researcher Cortney Gensemer, I realised after 20 years of pain and injury that I very likely had hypermobile Ehlers-Danlos Syndrome.

The awareness raised in that article led me to finally receiving a diagnosis and that has been absolutely invaluable. I now have a path forward to better pain management and hopefully, improving my quality of life.

Support independent titles by reading them, following them, and interacting with them, because one day, you or a loved one might just find the answers you’re desperately looking for on one.

Read my piece about hEDS on ethical true-life platform Lacuna Voices.