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has anyone ever heared of q t syndrom

7 replies

mummytojames · 03/10/2004 23:04

just found out that my partners side of the family are all at high risk of QT syndrom there has already been five death from this in there family my mother in law has it and my partner and ds is in the high risk of having it waiting to be tested it supposed to cause a sudden mass heart attack and is very common to happen in there teenage years with no chance of resus ive done a serch for it but cant seem to find out anything about it anyone else heared of it before

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Miaou · 03/10/2004 23:08

Mummy to james I think it's often known as long QT syndrome, although its incurable it is treatable by taking a betablocker each day ... there was a documentary on tv about it a year or so ago, that's what I remember from it. I'll have a look to see if I can find out any more...

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Miaou · 03/10/2004 23:09

here you go

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Miaou · 03/10/2004 23:11

this may be more helpful

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mummytojames · 03/10/2004 23:16

thanks miauo just read up on it and dont know whether the feel calmer or more stressed guess i'll have to wait for the test o be done they cancelled or last appointment im just thankful it is treatable my mil is not allowed a lot of the tablets because of the ones she on and have had ones taken of her that what was freaking me out a bit thinking there would be no tratment for ds and dp thanks again miaou

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Miaou · 03/10/2004 23:18

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mummytojames · 03/10/2004 23:24

just reading on the message bored of the secound link you gave me and there basicaly saying britain dont know enough about it and most hospitals dont know nothing at all so when ds and dp go for there test the hospital is going to get a very quick lesson by what you have given me i will print it of with the words thats what your looking for god i cant thank you enough

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luckymum · 04/10/2004 08:29

Hiya mtj, this site belongs to a UK based charity - they offer support, counselling and are campaigning for research