At age 30 while pregnant with my daughter

21

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

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.

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.

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.

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

Just found out a year ago when I was 42

27!

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

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

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 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'm 33 and chasing my Dx now ✊

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