Klippel-Feil

I was born with a crooked spine, some of my cervical vertebrae are fused together, and I have only one kidney. It's called Klippel-Feil syndrome. This is something I've never really felt comfortable talking about openly, even though it's not that bad. Many people who meet me don't really notice at first unless they're particularly observant. But it makes me feel very self conscious. I can't turn my head to the left so I do everything I can not to have to, I just don't put myself in situations where I have to turn my head to the left. It's become 2nd nature. If I'm walking with someone, I walk on their left. If I'm sitting beside someone in the movie theater, I sit on their left. Other than that, and having a short neck, people don't really notice, or else they just don't tell me.

I wish I didn't have this. But it's really not that bad. It makes me different, but maybe it helps me relate better with other people who look different.

I think it was worse when I was a teenager. Everybody noticed then, especially in middle school. I was very depressed in middle school because of it. I just wanted to die. Stupid reason to want to die, but I really did. I tried killing myself, just because of this stupid congenital thing. Sometimes it still depresses me.. but I live with it.

mspac mspac
22-25, F
3 Responses Jul 23, 2007

Hi, <br />
<br />
I appreciate you sharing your story. I have a son who is 4 months old and his had a diagnosis of congenital scolisis/Klippel Feil. He is currently in the process of undergoing a battery of tests to make sure nothing is wrong with his heart, kidneys, etc.<br />
<br />
If anybody could share their story with me I would really appreciate. This is frighten for both my husband and I and we do not know what to expect.

Hi, <br />
<br />
I appreciate you sharing your story. I have a son who is 4 months old and his had a diagnosis of congenital scolisis/Klippel Feil. He is currently in the process of undergoing a battery of tests to make sure nothing is wrong with his heart, kidneys, etc.<br />
<br />
If anybody could share their story with me I would really appreciate. This is frighten for both my husband and I and we do not know what to expect.

Thanks for sharing.