Looking for others with Craniosynostosis

I'm 36yrs old born with parts of many of the craiosyntosis syndromes, life has to been easy for many reasons

I actually have Pierre Robin but for some reason Alike decided that it’s the same as craniosyntosis? lol idk y’all

I never had the surgery. Mine was from a car accident. It forced my sutures shut in the right side if my skull. Caused a major imbalance all my life. It was discovered at 50. 6 years ago. My skull now sits crooked on my head. Has caused all my health conditions and learning disabilities for all my life. It all makes sense now they I know. But a lifetime of regrets and delays in my personal growth with some set backs. Wishing they had done the surgery.

Hey:) I’ve never found a single person either and it’s something I’ve always been insecure about. But I had surgery when I was a baby. But my surgery was done a specific way because mine was hard to reach it was near my eye. So I have a scar going across from ear to ear on my scalp. I’ve always wanted to meet people who have had or still have this condition.