Long QT

Hi All,
Just wanted to ask if there is anyone in the group from England who has Long QT? I was diagnosed 4 years ago and have since spent hours on different sites trying to find someone to chat with. I have tried CRY -SADS etc.etc. but with no luck. I believe most of these sites are for sudden death in the young and the support of their families. My consultant tells me that my condition is unusual at my age -63.
Although I am well into this ICD lifestyle now and accept it as part of my everyday life, I would have loved to have been able to speak to someone in the early days. I was very happy when I found this site and have enjoyed being a part of it for the past 4 years.

So, to get back to my original question - does anyone know of any Long QT support groups in England? If there are any I would like to be able to help and support in some way.

Take care all

Lesley.

1 Comments

Prolonged QT syndrome

by bunnykin - 2008-09-21 01:09:48

Hi Lesley,
If you don't mind sharing your concerns with me though I'm not living in UK, I'd be happy to do so. I've also got LQTS detected some years too. There's been Sudden Cardiac Death in the family as well; Happened to a sibling not in his youth at all. As for myself, I've got an ICD since 2004. In 2003 after VT that almost progressed to VF was detected by my PM my EP decided that it should be upgraded to an ICD to prevent future VTs/VF. Too much has happened ever since; Not very pleasant outcome since implant but am still trodding on... You can send me private message thru this site if you wish or we can exchange views and experiences thru email. Meanwhile, I wish you good health/all the best, God bless. Bunnykin

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