As you know I haven’t been keeping up to date with this thing but check out this news report about a three-year-old boy who has Erythropoietic Porphyria from Idaho in the United States. It was reported about over a year ago but I haven’t been keeping track of things as I said. What’s really freaky is we look kind of similar…

Nicholas Ashby | Me, Thomas McNab

The report goes onto say everything I’ve told you about in my site; blood transfusions, bone marrow transplants and enlarged organs such as the spleen. They mention if he doesn’t get a Bone Marrow Transplant that his life expectancy is only Eight to Ten-years-old which is EXACTLY what doctors told my parents when I was diagnosed. I know the United States has very different whether to the UK but surely by now I would have thought that doctors would have known more about Erythropoietic Porphyria to stop telling people they’ve only got a life expectancy of ten years. There’s no way I’m just a ‘special case’, surely I can’t be the oldest living person to suffer from it, can I? Damn, this has woken me up. It’s not everyday you read about someone else going through the exact same things as you did. The boy’s mum has set up a website so I’m going to try and see if I can contact them. Tell you more about it later if I do, see ya.

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About tomsbrain

The central hub of all things Thomas McNab - a 30-year-old Yorkshire-born writer and filmmaker, living with a disability, and medicating himself with obscene amounts of films, television, and amateur wordplay. Find out more at http://tomsbrain.2ya.com.

Posted on November 7, 2005, in Hospital, Old Posts. Bookmark the permalink. Leave a comment.

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