Which advice would you give to someone who has just been diagnosed with Klippel-Feil Syndrome?

See some advice from people with experience in Klippel-Feil Syndrome to people who have just been diagnosed with Klippel-Feil Syndrome

2 answers

Live your life to the fullest you can. You can find a way to adapt most things to a way that’s comfortable for you to do them. I get into some weird positions reading books and things to make it easier on my body (holding books up bothers my neck) don’t worry about how things look to someone else. Above all listen to your body! You know it best. Don’t let someone make you do something that makes it worse.

Posted Apr 27, 2019 by Heidi 1600

Find out the degree of your condition and the live your life as normal as possible!

Posted Jan 11, 2021 by Line 1600

Klippel-Feil Syndrome advice

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Stories of Klippel-Feil Syndrome

KLIPPEL-FEIL SYNDROME STORIES

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ABOUT ME.

I am 24 years old and I live in Denver, Colorado. I was diagnosed with KFS since I was 2-4 and I have bilateral hearing loss with chronic respiratory illness. I am also a medical cannibis user, which may falter my breathing, but I am an active person...

791

1/12/16, 5:49 PM by Vic

KLIPPEL-FEIL SYNDROME

I was diagnosed with kfs type 4 as a child. It was challenging. I was never able to do sports and was always treated like glass. Which made it hard to find friends. At age 15 I underwent a 16 hour extensive surgery to save my life. After I was suppos...

697

4/18/16, 6:23 PM by Val

WYATT'S STORY

Was diagnosed when he was couple days old. He had heart value that wouldn't closed and it healed on its own, he was born with multicyst kidney so he only has one kidney. Mental and development delays, 4th n 5th vertebrae infused giving him short neck...

694

3/23/17, 10:10 PM by Wyatt

A FRIEND HAS THIS DISEASE

she has been suffering tremendous pains and she hasn't find a doctor that can help her, she had a surgery but it was done wrong.

675

12/15/15, 6:28 AM by Veronica

DAUGHTER

Our daughter has Klippel-Feil c3-c6, torticoli, sleeping apnea, cervical ribs and fused ribs, spinal bifida occulta, and scoliosis which is cause by a extra vertebrae

607

4/6/16, 3:12 PM by Linda

Which advice would you give to someone who has just been diagnosed with Klippel-Feil Syndrome?

See some advice from people with experience in Klippel-Feil Syndrome to people who have just been diagnosed with Klippel-Feil Syndrome

Klippel-Feil Syndrome advice

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