My diagnosis took 6.5 years(/33 years). I am certain that I would still be undiagnosed if I hadn& #39;t figured it out myself and compiled a 140-page report for my specialist that included medical and family history, imaging and photos, diagnostic criteria, and journal articles. https://twitter.com/ZebraOrphans/status/1319278992965259269">https://twitter.com/ZebraOrph...

I slipped two chocolate bars into the envelope with my report (because it was a lot of reading and I& #39;m not a monster) and dropped it off with her administrative assistant. At our next appointment, the first words out of her mouth were, "well, I& #39;m convinced."

Sorry but no one should have to "convince" a doctor of their diagnosis! Doctors, diagnosing patients is part of your job.

Moreover, patients shouldn& #39;t have to have grad school training and write a mini-thesis in order to get doctors to listen to us. For several months, I set my degree aside so I could do the necessary research and write up the report that finally got me taken seriously.

My doctor also told me at that appointment that I now knew more about EDS than probably any other medical professional who would ever treat me. She meant it as a compliment. It was a terrifying thing for a newly diagnosed person to hear.

(She proved her point by refusing to learn anything about EDS while I was still seeing her. She also refused to let me take the lead in the absence of any direction from her. Again, doctors, learning about and treating your patients& #39; conditions is also your job.)

Also a reminder that Eurordis found that women wait an average of 16 years for an #EDS diagnosis. Men wait just 4 years.