1. Community
  2. Brain and nerves
  3. Spinal Problems

my child is 10 years old and was diagnosed with Klippel-feil Syndrome ...

Posted , 5 users are following.

Guest
Guest

my child is 10 years old and was diagnosed with Klippel Feil Syndrome at 10months old in South Africa where she was born , we now live in the U.K but find it hard to get medical help with all the new problems that come up every few months. we have had a lot of help from the Klippel feil support group worldwide and have discovered so many problems with medical help and little knowledge of the condition by doctors .we saw a GP who had no idea what KFS was. so any information is great.

regards

Sue.

[i:18e3076c09]This message was automatically imported from the original Patient Experience[/i:18e3076c09]

0 likes, 6 replies

6 Replies

  • Guest
    Guest

    Posted

    hi my name is linda i am 46yrs old i have kfs it is very annoying that the medical profession dont know much about kfs if you want to know anything about kfs i will gladly tell you in 1991 i started a group get together in manchester i live in west sussex now what part of the uk do you live in i did start to do some fundraising as well Do you attend a genetic dept at a hospital i found they knew a lot about it and this is when they started to do reasearch into it hope to hear from you soon

    best wishes

    linda

    [i:e7a9581196]This message was automatically imported from the original Patient Experience[/i:e7a9581196]

  • Guest
    Guest

    Posted

    We have a 1 year old son who has been diagnosed with KFS. We are about just starting, what i think will be, a long and turbulent period, as we discover what problems our son will have to live with. We have already found the knowledge of the medical profession to be, at best scant. I hope it improves. I would be very happy to know of anyone who lives in the UK with experience of this condition.

    [i:1d58c1f166]This message was automatically imported from the original Patient Experience[/i:1d58c1f166]

  • kooka
    kooka

    Posted

    I was diagnosed with KFS when I was born in Australia. At the time, not much was known about the condition and my parents were literally given a size A5 sheet of paper detail what was known about it. All doctors could say was that I would be short, may have hearing and learning probs as well as other things.

    I am just under 5 feet tall with no hearing in my right ear, although the hearing in my left ear is normal.

    I went to mainstream school. My mum took me to see a special school, but I had the strongest feeling that I didn't fit in there. I've never wanted to be labelled as \"disabled.\"

    I have suffered serious bullying probs throughout my life. My KFS is very noticeable and have always been teased about it. People will call names, stare and attempt to mimic the condition.

    I also have Eisenmenger's Syndrome, which has resulted in heart and lung failure which is going to shorten my life.

    In a nutshell, I've been faily lucky. I'm not completely deaf and have always kept well other than being unwell with heart probls.

    I'd say to any parents with a youngster with KFS is that you must be aware of bullying which will start for them the first day at school onwards. The emotional problems associated with this need to be dealt with sensitively. You will need to give your child a lot of support, but at the same time, let them become who they want. The law is recognising disability rights so hopefully your child will be successful at whatever they do. Good luck.

    Kooka

  • emma98791
    emma98791 Guest

    Posted

    Hi, I have KFS and have come across the same problems with countless GP's never even hearing of the condition.

    I have also recently found support forums which I find very useful.

    I am now 25 years old, if you have any questions I would be happy to try and help .. smile ..

    • Cinti22
      Cinti22 emma98791

      Posted

      Hi Emma, my name is Beka and I'm from Hungary. I had a friend, she's name is Luca. She has KFS. Since this is a very rare illness, she don't talk over with me and my friend, because she sais "You don't no how I'm feel".So I think that you talk with she about KFS, that you how live your life with KFS. I hope you ask me as soon as possible. 

    • ntokz25438
      ntokz25438 emma98791

      Posted

      Hi, my son was diagnosed with kfs and he is now 13 years and has started experiencin g some severe pains in his spinal bones, please help if you have can. Can you live with kfs without any operation?
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.