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Claire McNamara Screengrab/RTE

'I am one of the lucky ones': Galway girl cured of rare blood disorder

A match for Claire McNamara was found on the international register.

A 14-YEAR-OLD from Galway has been cured of a extremely rare blood disorder known as PNH.

Claire McNamara was diagnosed last July, but unfortunately there was no bone marrow match.

However, her doctors at Our Lady’s Children Hospital checked the international register, where a match in Europe was found.

Bone marrow transplant 

McNamara underwent a successful bone marrow transplant from her donor – a 22-year-old male from Germany.

Speaking to RTÉ News, McNamara said when she was sick she felt very low and didn’t want to go to school.

Since having the operation, which has cured her of the disorder, she is much happier and can sleep a lot better.

“I am one of the lucky ones.”

PNH recently hit the headlines when the Health Service Executive (HSE) agreed to supply patients with the drug used to treat the disorder, Soliris.

The cost of the drug per patient per year is in excess of €400,000. While it is used to treat PNH, it does not cure it.

Read: ‘It’s a scandal’: Patients with rare blood disorder being denied access to life-saving drug>

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18 Comments
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    Mute William Grogan
    Favourite William Grogan
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    Apr 13th 2014, 3:38 PM

    What’s a RIB doing out so late at night? Why didn’t it have a chart, a GPS, VHF and a depth sounder? Why didn’t they phone for help? In Ireland and the UK, as opposed to the rest of Europe, any fool can drive a RIB. No licence is needed and no training. It’s about time that stopped.

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    Mute Kieran O Leary
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    Apr 13th 2014, 5:30 PM

    I suspect there was some bevvies involved! Lots of people have done that en route back from town by night. It’s a very tight channel. Why the need for all the drama? Put out an anchor and wait for the tide to re float the boat (which is essentially what the lifeboat did). Foolish getting into the mud to push off, as you can sink into it. I bet they’re embarrassed today.

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    Mute Niall Lonergan
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    Apr 13th 2014, 4:36 PM

    They ran aground? So getting out and f*cking walking wasn’t an option?

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    Mute Kinsaleable
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    Apr 13th 2014, 5:26 PM

    I’m sure that was in their initial plan Niall but what you obviously aren’t aware of is that the mud is several Metres thick so it would have been suicide to just “walk” off

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