:D :D I AM A 36YR OLD WITH KFS IT HAS NEVER GIVEN ME ANY REAL PROBLEMS UP UNTIL NOW I HAVE HAD TO GO ON DEHYDRACODINE FOR THE PAIN IF ANY ONE NEEDS ANYTHING ANSWERED I CAN TRY AND HELP
hi i am 52 married with 3 grown up children and 4 lovely grandchildren,i've known about having kfs for years i also have spondylosis and arthritis in my shoulder and knees & hip have used a wheelchair for 10yrs now ,also have a leak in one of my heart valve, had a mri scan 8 weeks ago thought no news is good so i thought no problems until today received letter from rheumatologist, i have a nerve trapped so may have to have operation,which will be my 8th ,other problems ,i went on this web page for the first time and found there's other people out there with same problem ,at last i don't feel alone ,would like to know whether there is a club or website out there for cfs sufferers
Hi!
I'm 19 and have Klippel Feil, i was diagnosed at birth with KFS and had an operation to correct Sprengal's shoulder aged 4. I have a degree of hearing loss in one ear which i'm told may be linked to KFS. As far as pain goes, i started to have pains in my shoulders and upper back aged 16 and managed to find a chiropractor who knows about KFS in Bath.
In regards to clubs etc for KFS, there's a facebook group with a surprising number of members from around the world! Also, theres some forums out there too!
Are you guys from the UK, most people i've spoken to are from the US!
Hello, I am 25 and KFS! I have known about it from birth and also have hearing loss, I have recently been to see a consultant and has been discovered that more of my verterbrae have fused, are you checked reguarly and under a consultant? Did you have any more verterbrae fused from when you were born? I really want to learn more about the condition. Hope your ok x
Hi, I am 57 years old and was born with Klippel Feil Syndrome. This has never held me back, I married,
had two sons, now have 6 grandchildren. I worked full time for 30 years, passed my driving test, although had to use mirrors for reversing, So if you have this syndrome you can do most things if you try. The only
thing that annoys me is the fact I cannot wash my own hair as my arms do not reach up to my head. Now I live on my own has my husband died 7 years ago. I have never met anyone else with this condition. If there is anyone in the Cheshire area please get in touch as I would love to meet with you.