Klippel-Feil Syndrome

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Klippel-Feil Syndrome
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I'm new here!

Hi, my name is silverlining101. I'm here because I have Klippel-Feil Syndrome. I have severe neck pain and help is really hard to find.


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Newly diagnosed

I have finally found out the reason as to why I am the way I am. This has not stopped me from travelling, living and experiencing life as it is. This has finally reminded me to put limitations on my physical abilities but I will never stop aiming for my dreams and goals in life.


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#KlippelFeilSyndrome # hi so I’m currently waiting on a scan of my neck which has developed a lump and swelling on right side , I was diagnosed with spina bifida as a baby later realised it as klippel . I haven’t had any follow up appointments since I was 16 and to be honest as much as it affects me emotionally I haven’t really experienced any physical symptoms aside from shoulder pain and restricted movement of neck and shoulder , my question is is klippel likely to cause more issues as I get older being 41 now and what are said issues, basically I just want to know what I’m up against as I’ve never been told much about the condition thanks laura xx