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16 October 2014

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My Early Life Experience

By Sam Knights
Autumn 2007, Wrexham
A digital story from Yale College

"Seventeen weeks old and completely unaware of what I was going to experience in the early stages of my life. I was 3 years old when I was diagnosed with Hystiosytosis, a rare disease which affected my skull. The white cells eroded away part of my skull in 2 places. It left me with 2 holes in my head, one at the front and the other on the top in the middle.

Even to this day, I still have the holes, the bone didn't really grow. Instead, a thin layer of tissue has grown in place of my skull. It protects my head but not as much as it would if my skull was still in one piece. This baffled the doctors as it is an unusual condition.

When I was in school, my best mate wanted to feel my head. She said, "Ew, that's minging." I just laughed but it did hurt as I knew that my head wasn't normal. For years I remember I had to go to the hospital for blood tests, x-rays and head scans. I had to keep my head extra still so that the scan machine could take pictures of my head. The condition really affected my life.

I guess when I was younger I wasn't really aware of the consequences. Now I know that if it was anywhere else in my body I would have to have had chemotherapy to get rid of the cancerous cells. I was 13 when I was discharged from the hospital. I was lucky as the cells dispersed and they weren't found anywhere else in my body.

Seventeen years old and now I'm completely aware of what I experienced in the early stages of my life but so long as I'm careful, I can live my life the way I want to."


Your comments

"Excellent story, well spoken, good use of images shown as you tell the story of your early life experience." Sharon Wallace, Tyne & Wear, May 2008.

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