I’m 59 n have it but didn’t know till I was 46 it’s a bad deal.Just wanted to help in anyway. ;) Ps they didn’t know to much about our system n still don’t sad but true! Doc said it was probably good that I didn’t know but I knew something wasn’t right but just kept living my life the best but now @59 bones are catching heck new hip,neck surgery they did what they could but want go any further.Wanted to say it’s what it is but never let anyone tell you that you can’t do this or that n to stay positive about life at all times.Ive looked on here very few of us so I couldn’t not say something to you about this crazy system we have.So Give Them All You Got In You n believe n Dream ur Dreams ur still young n they will find away to help you.Yeah I’m babbling so what Just wishing you the BEST of Life never give UP. Gods Speed n Feeling for ya
I have KFS and cannot find any doctors that help adults. I was sick from birth and the pain got horrible when I hit puberty. Still,doctors did not diagnose me. At 35 I was in a car accident, that was when I had my first cervical X-ray and found out I had KFS.
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I've got klippel feil and I'm in my 60s. I felt inspired by this story, thanks so much for sharing.
I’m 59 n have it but didn’t know till I was 46 it’s a bad deal.Just wanted to help in anyway. ;) Ps they didn’t know to much about our system n still don’t sad but true! Doc said it was probably good that I didn’t know but I knew something wasn’t right but just kept living my life the best but now @59 bones are catching heck new hip,neck surgery they did what they could but want go any further.Wanted to say it’s what it is but never let anyone tell you that you can’t do this or that n to stay positive about life at all times.Ive looked on here very few of us so I couldn’t not say something to you about this crazy system we have.So Give Them All You Got In You n believe n Dream ur Dreams ur still young n they will find away to help you.Yeah I’m babbling so what Just wishing you the BEST of Life never give UP. Gods Speed n Feeling for ya
I have KFS and cannot find any doctors that help adults. I was sick from birth and the pain got horrible when I hit puberty. Still,doctors did not diagnose me. At 35 I was in a car accident, that was when I had my first cervical X-ray and found out I had KFS.
Yes it too my last accident to actually get diagnosed at 32 it sucks
I was born with KFS
This can be a challenge in some areas.
What is the disability percentage for it ?
Thank you for this 💕 my son has KFS also he’s 7 and he gets bullied at school it breaks my heart
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