14 Common Myths About Living With Klippel-Feil Syndrome

Klippel-Feil syndrome (KFS) is a rare, musculoskeletal, degenerative skeletal disease affecting the cervical spine, organs, and other systems of the body. Klippel-Feil Syndrome Freedom is an organization dedicated to raising awareness and empowering those with KFS by providing educational resources and organizing peer support groups, helping to foster a sense of belonging and community.

Like many rare diseases, KFS is associated with myths about what it’s like to live with the condition. Christy, part of KFS Freedom, decided to ask the KFS community about the long-held myths they’ve heard, and reveal what their truth is instead. This is what they had to say:

1. “I am told that KFS is not causing my chronic pain. It is. For the past six and a half years, my life has been turned upside down. I have three kids, and I struggle to make it through each and every day. Still, I have hope, and that is what I cling to.” — Christie B.
2. “I was pretty much diagnosed at 7 years old. My mom was told l wouldn’t live to see my first birthday. I’m now 38. I was told l wouldn’t be able to walk far or for a very long time. With the help of my father, he taught me how to walk and keep my balance. I was told, ‘No roller coasters, no sports, nothing that will bring physical contact with other people.’ But my motto is: if you feel you are capable of doing it, then do it. Have fun. It’s important to remember that with KFS, everyone doesn’t need to look like everyone else. My mom was also told to put me in a home and forget about me; I’m glad she ignored the doctors on that statement.” — Cindi S.
3. “I was told at 16 that I would be bedridden by 50. I’m 63 and still walking. Yeah!” – Kris M.
4. “I was also told as a teenager that I could be facing a wheelchair by 40. I’m now 40 and have refused to let it hold me back. I traveled the world doing manual jobs in the offshore drilling industry. Now I’m married with an adopted son, and both he and I are halfway to our black belts in Taekwondo. I do have good and bad times, which are getting worse as I get older, but as I eventually mature, I’m learning to cope and manage the tough times a bit better. If the day comes when I do need a wheelchair, I guess I’ll need to face that with the same bravery and positivity that I take from reading everyone’s posts here.” — Iain L.
5. “I am 47, and nine years ago, I was diagnosed after a lifetime of puzzling issues. The biggest myth I have been told, repeatedly by spine specialists, is that KFS does not cause pain. I call complete B.S. I guarantee there is no current patient data to support that statement.” – Sharon N.
6. “I was told when I was 41 that I’d be in a wheelchair by the time I was 45. I’m now 72, have traveled the world, still drive, and there’s no sign I need a wheelchair yet. I have two grown sons who help me a lot. I encourage everyone live your life.”– Dilys H.
7. “I was diagnosed at 4 with KFS. I am now 48 and am also still walking (note: some days, limping). If it weren’t for this group and the KFS Freedom page I wouldn’t be as knowledgeable on how debilitating our rare disease can be. Having support is key in getting us warriors through a tough pain day or to just get feedback from our friends in this group.” — Sharon R.
8. “At doctor’s appointments I am asked all the time who did my cervical fusion surgery. I have started telling them that G-d did it. The looks on their faces is priceless. So much better than, ‘I was born this way.’” — Susan C.
9. “My mum was told I’d never walk and would likely have learning disabilities. I walked at 9 months old and now have a master’s degree.” — Nikki R.
10. “My parents were told I’d never sit up, crawl, or walk and I wouldn’t live past the age of 4. Later, they said I’d be in a wheelchair by 20. I almost died three times due to anesthesia complications on three separate surgeries! However, I believe G-d isn’t finished with me yet. And now I’m 50!” — Michele R.
11. “In 2008 I had a CT scan –which I had to ask for — with my old general practitioner. When I got the results, I saw a different doctor, a woman who was head
    of that practice at the time. The results mentioned the fusion but read, “this is
    insignificant.” After looking over the report, she said to me, “There’s nothing
    wrong with your neck that isn’t the same as everyone else your age.” Honestly, I still feel angry with her for being dismissed. — Sandra M.
12. “I was told at 14 years old that I would be in a wheelchair at 40. I am now 41 and still standing.” – Christy C.
13. “I received a proper diagnosis in my 20s, but always knew I was different. I was told I should live like a fragile person, but me being me, that wasn’t going to happen. I feel like you only get one life and if you are always being too cautious, what kind of life would that be? I also was told to expect in my older age to not be walking, but I’m 56 and other than having more pain than I used to, I’m walking just fine. I have friends my age who tell me they have just as much pain and no disability, so I feel very fortunate.” — Karen W.
14. “I most commonly hear, ‘It’s just fused bones and shouldn’t cause you any
    pain.’ My pain management doctor won’t allow me to be under contract to get pain
    medication. He said that KFS is not a diagnosis that warrants pain. I have been to see
    him when my pain level around my neck and shoulders is around an 8 — and he still
    dismisses me, sending me home with nothing to help manage pain. I know many of us here have been told similar things. Maybe one day (with the help of KFS Freedom), that will change!” — Nancy D.

Do you have Klippel-Feil syndrome? What’s one myth you’ve heard about living with KFS? Let us know in the comments below.