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Columns and Reflections

Diseased Media

from The Irish Times, November 22 2000 (revised)

It’s funny, but one of the great teachers in life is serious illness. For seven years now I have lived with a life-threatening genetic disease called Fanconi anaemia, the incidence of which is two in one million. The disease was in the news a few weeks ago. Controversy was caused when the parents of Molly Nash, a US girl with FA, had their embryos genetically screened, to determine which one would be the best match for a stem cell transplant for Molly.

I watched the coverage of the Molly Nash case with interest, and was amazed that the prestigious ‘Irish Times’ managed to misspell ‘Fanconi’ on multiple occasions; but then I heard a doctor on the radio pronounce it wrongly, and even the ‘Sunday Tribune’ messed up a bit. As for RTE, well, they didn’t even mention the name of the illness. It all made me feel like I knew just that little bit more than those cocky journalism types – which is good for the ego.

I can’t imagine myself without this illness; I’m sure it has influenced my personality in so many small ways. Without being sarcastic, it does give you an insight into human suffering, and hopefully influences you for the good.  Just talking to my doctor, he says dealing with death every day has taught him not to worry about trivial things like a scratch on his car. It’s definitely an experience – and, in a way, perhaps, not one I would like to have missed.  It’s certainly a handy excuse when it comes to getting off school!


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