Late EDS Diagnosis: When Were You Diagnosed?

i was diagnosed at 16, but it took three years for anyone to take me seriously about the pain i was experiencing.

36. Finally seeing a geneticist next week to piece together my laundry list of mystery medical problems and get final answers. It’s too long.

I'm 33 and chasing my Dx now ✊

I was just diagnosed last year but once I became aware of it and started looking into it, I could trace many of my issues all the way back to my childhood. It’s like continually gathering the pieces to the puzzle but just a few at a time.

I had problems since childhood but it’s so rare that no doctors diagnosed me until I was 32 and my geneticist told me then that I had hEDS. Then in 2020 after doing genetic testing I was diagnosed with a rarer type of EDS… also I was diagnosed with POTS when I was 30 and I had it since childhood

I’m 36, I got diagnosed when I was 32 so late for me as well

I’m 19 bout to be 20 and have just started having extreme symptoms the past year… working on a diagnosis to get some help from hopefully

27!

Just found out a year ago when I was 42

Murbear - this is so helpful, my severe symptoms started after I had multiple falls off my horse last year.

I was 29/30. My geneticist said that the trend she sees is being diagnosed very early in life or around our age. Not much in between.

I was (and am) 28 when I was diagnosed. Depending on which type you have and the severity, you may not have any problematic side effects until your 30s.

It’s very common for women to get diagnosed later in life, in their 30s. Usually after what they call a deconditioning event… Pregnancy, car wreck, a big surgery, a sickness where you lay in bed for a while. Anything that would decondition your muscles and start a chain reaction with musculoskeletal pain and an inflammatory response causing anything from stomach issues to tachycardia, etc.

Remember that many go their entire childhood undiagnosed, and it’s common to have the symptoms show around the 20’s. :)

21

At age 30 while pregnant with my daughter