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Me an' my Dicky Ticker

Last year I was diagnosed with Long-Q-T syndrome, a congenital heart condition that messes up the electro-chemical impulses of the heart, causes syncope (black outs) and in some cases, death. It was only by a stroke of luck that a doctor I didn't normally see noticed something in my notes.I was rather lucky as I actually started having probelms when I was fifteen, some twelve years ago. I began to pass out suddenly, several times a month. The attacks were quite frightening for both people watching and myself.

After,two years of being on epilepsy tablets, and lots of tests, trips to the Hospital etc, etc, things started to get worse. I collapsed fourteen times in one night and was rushed to Hospital.

After two weeks in and out of conciousness, difibrillation (which enlarged my heart)and many questions; the doctors began to realise that it wasn't my head that was causing this but may be my heart. Since then I have lots more tests, and two relapses. The relapses usually due to a change in medicine, the most recent was in January of this year as my body had grown out of the dose.

Wanna know more?

For more imformation on Long-Q-T Syndrome please check out the Sudden Arythymia Death Syndrome Organisation in the USA.

The SADS Foundation

For more imformation on Sudden Death Syndromes (Miocardiopathy)and Long-Q-T in the UK please check out the Cardiac Risk in the Young (CRY) site.

Cardiac Risk in The Young

If you wish to contact me about it email Nadezdha

So what?

What has it got to do with you, why am I telling you this?

Well, quite a bit really!

In the US Long-Q-T is quite well known and can often diagnosed before it does any real damage. In Britain very little is known about the condition and therefore Long-Q-T and it's other ten SDS (SUDDEN DEATH SYNDROMES) may be killing up to four young people a week.

THE POINT IS THE MORE PEOPLE WHO KNOW, THE MORE PEOPLE CAN BE HELPED!

The probelm usually shows up during puberty but can appear as young as a baby or as late as 35 years old. The only real symptoms are the blacking out and racing heart. The heart becomes irregular and then races up to 200 beats a minute, this causes a lack of oxygen to the brain and the person passes out. It is often mis-diagnosed as epilepsy (as I was) and does not show up after death. Unfortunatley, many sufferers die from playing sport, though some die in their sleep.

Fortunatley, once it is found most cases can be controlled with medication and the sufferers can live virtually normal happy lives Hurrah!

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