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Klippel Feil Syndrome

Posted , 4 users are following.

lynne17389
lynne17389

Are there any other people out there with this syndrome, if so I would really like to be put in touch with them.

1 like, 3 replies

3 Replies

  • LozV
    LozV lynne17389

    Posted

    Hi Lynne,

    I realise you posted on the site several months ago. I just found out that I was diagnosed with Klippel-Feil when I was six months, and had it confirmed by a spinal consultant recently.

    If you want to chat, I'd be happy to help in any way I can

    Lorraine

     

  • daniel96878
    daniel96878 lynne17389

    Posted

    Hi Lynne, I was diagnosed with Klippel Feil Syndrome when I was born, this has affected my left shoulder, it is fused to the neck giving me no neck movement. I was also born with Scoliosis and had a body brace through school until I was 13 when I had spinal fusion surgery at Royal National Orphapedic Hospital.

    Ive never met anyone else with Klippel Feil and would be happy to chat.

  • emma98791
    emma98791 lynne17389

    Posted

    Hi Lynne, I am a 25 year old female from Liverpool, Merseyside and I was diagnosed at birth with KFS. My mum was only young when she had me doctors did not know much of the condition with it being uncommon. I have a different physical appearence than most I have a shorter neck (which I have suffered bullying because of), I have recently found this page and others and must say I am glad I am not the only one as I don't know of anyone else with this condition. I am on Twitter if you would like to add and follow me @06Lamb it would be great if you could reply I would love to know more and chat with other people with the condition smile
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