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Congenital analgesia: The agony of feeling no pain
2012-07-20 0:00

By Steven Pete | BBCNews

Steven Pete and his brother were born with the rare genetic disorder congenital analgesia. They grew up - in Washington state, US - with a sense of touch but, as he explains in his own words, without ever feeling pain.

It first became apparent to my parents that something was wrong when I was four or five months old.

I began chewing on my tongue while teething. They took me to a paediatrician where I underwent a series of tests.

Steven (right) with his brother Chris in 1983

At first they put a cigarette lighter underneath my foot and waited for my skin to blister. Once they saw that I had no response to that then they began running needles up and down my spine. And since I had no response to either of those tests they came to the conclusion that I had what I have - congenital analgesia.

By which point, I had chewed off about a quarter of my tongue through teething.

We grew up on a farm. My mum and dad tried to be protective without stifling my brother and me. But when you’re out in the country, especially if you’re a boy, you’re going to go out and explore and get in a little mischief.

So during my early childhood I was absent from school a lot due to injury and illness.

There was one time, at the roller-skating rink. I can’t recall all of the details, but I know that I broke my leg. People were pointing at me because my pants were just covered in blood from where the bone came out. After that, I wasn’t allowed to roller skate until I was much older.

When I was five or six years old, I was taken away from my home by child protective services. Someone had reported my parents for child abuse.

I was in the state’s care for, I believe, two months. And during that time I broke my leg before they finally realised that my parents and the paediatrician were telling the truth about my condition.


Read the full article at: bbc.co.uk

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