Hey! This is my first time on here. I'm really excited to meet people who are experiencing similar things. Do any of you have Craniosynostosis? I've never found someone else that has it


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  • MaddieCapy


    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.

    • AndieFallow


      I'm not sure exactly where mine was. I wasn't aware it could be in a specific place tbh. I have a scar from ear to ear as well. And I can still feel a staple in my eye socket. (it hurt super bad when I was little but went away)

      • MaddieCapy


        did u wear a helmet after surgery?

  • betterhealthjourney


    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.

  • Alux


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

  • Poppit


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

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