Latest
I'm new here!
Hi, my name is Hope13. I'm here because I have been diagnosed with Klippel feil syndrome and findng it hard to cope. Normally, I am resilient but this has knocked sideways.
Klippel-Feil Syndrome
Join the Conversation on
Klippel-Feil Syndrome
Klippel-Feil Syndrome
668 people
0 stories
51 posts
About Klippel-Feil Syndrome
What's New in Klippel-Feil Syndrome
All
Stories
Posts
Videos
Latest
Trending
Post
See full photo
Calling all Klippel-feil members
klippelfeilsyndromeblog If
you live with Klippel-Feil Syndrome, and you feel ready to share even a small part of your story, I'd be honoured to hear it. Your experience doesn't have to be dramatic or polished, it can be a moment with a doctor, a strange symptom you've carried quietly, or simply what it feels like to move through the world in your body. Anything that has an impact on you, you're welcome to share the constructive or negative experiences you have had while living with Klippel-Feil Syndrome.
#KlippelFeilSyndrome #KFS
Post
Any out there with Klippel-feil syndrome?
It seems to have gone rather quiet on the Klippel-feil syndrome side of the world. Is there anyone else on here still active with Klippel-feil syndrome?
2 reactions •
5 comments
Post
See full photo
Grief, then healing, then grief again.
If you’ve carried grief quietly, this one might feel familiar. Blog 10 is now posted. This one touches on the grief of pain, and the process of healing from trauma little by little to find yourself still in physical pain. #KFS #KlippelFeilSyndrome #ChronicPain #Grief
8 reactions •
3 comments
Post
Klippel-feil syndrome thoughts.
Living with Klippel-Feil Syndrome. The conversations have gone quiet, but we’re still here, writing a living blog for those who need a voice, a mirror, or a moment of truth. #KFS #KlippelFeilSyndrome
1 reaction Post
I’m new here!
Living with Klippel-Feil Syndrome. My blog is a living archive—for those who need it, not those who want to extract. If you’re here to listen, you’re welcome.
6 reactions •
4 comments
Post
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.
9 reactions •
7 comments
Post
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.
1 reaction Post
Progressive?
#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
2 comments
Story
