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Sudden Adult Death Syndrome explained

NOW! Magazine -  August 2003

 

SADS explained - NOW magazineThe biggest killer for 16 to 35 year olds isn’t car crashes or misadventure.  Instead, around 3500 young people die suddenly and unexpectedly each year, many from heart abnormalities categorised as Sudden Adults Death Syndrome (SADS).

Most victims, like football superstar Marc-Vivien Foé who died recently during a televised match, seem perfectly healthy and have no idea they are unwell.

Most of us have felt dizzy at some point if we’ve skipped breakfast or felt our heart racing when we’re stressed, but for a small group of people this could be a sign that their hearts are straining more than they should.

Experts don’t want to frighten young people, but they’re keen to raise awareness and believe that routine testing could save thousands of young lives.

I was so close to dying and didn't realise it

Lucy HeatherLucy Heather, 27, is a consultant for top celebrity agency Max Clifford PR.  She thought her dizzy spells over the years were caused by her hectic lifestyle, but timely tests showed she had a potentially fatal heart defect that could have killed her at any moment.

“I’ve always considered myself fit and played sports at school, but for as long as I can remember I’ve had occasional dizzy or fainting spells.  As I got to my 20’s they seemed to happen more often.  I just put it down to stress.

Then, one afternoon in April, I fainted again while walking in the door from work.  I’d felt very strange beforehand, my heart was pounding so fast I could hardly breathe and I was sweating and dizzy.  My fiancé Chris called an ambulance and the paramedics checked my heartbeat with an ECG machine.

The test showed my heart was beating very fast and irregularly and not pumping my blood properly, meaning I could have a stroke of heart attack at any moment.  They rushed me to hospital where doctors put me to sleep and had to shock my heart with an electric jolt to get it beating normally again.

I left the next day feeling physically fine, but worried because they had no idea what had caused this whole episode.

I was told I needed to see a cardiologist urgently, but the NHS waiting list was months long.  Luckily for me my boss offered to pay for me to see Professor Jane Somerville in Harley Street the very next week.

Tests there showed I had a condition called Wolff (Wolfe) Parkinson White Syndrome, where your heart beats normally then does a little hiccup beat afterwards.  Instead of having one electrical channel into the heart, there are two or more similar channels so the extra electrical signal causes an extra beat.

This was causing me to have these fainting spells.  My heart would have an occasional big electrical input, beat too quickly and fill up with blood so not enough blood got to my brain.

Luckily, my specialist said it was a defect that could be cured, but I needed an operation urgently.  In the meantime I could only do mild exercise and had to avoid all alcohol, caffeine and fizzy drinks.  My whole lifestyle had to change.

Even though I was an emergency case, there was still a two-month wait for the operation.  Those weeks were agony.  I’d gone from being seemingly healthy to being close to death.  Every night I would go to bed convinced that I wasn’t going to wake up the next morning.  I don’t know what I would have done without the support of Cardiac Risk in the Young (CRY).  They really understood what I was going through.

My parents felt so guilty.  Whenever I’d phoned them in the past nd told them I’d had a dizzy attack, they’d send me a voucher for a massage and tell me I needed to relax more.  But how could they know?  Even my doctor didn’t pick it up.

On the day I went into hospital for the operation, I wrote my boyfriend a letter in case anything went wrong.  Luckily he never had to read it.  I had a procedure called radio frequency catheter ablation, where they go into a large artery through your groin and put wires up into your heart.  They stimulate the heart to beat really fast and see where the extra electrical pathway is and destroy it with radio waves.  A decade ago the only answer was to have open-heart surgery, but thankfully I only have a small scar in my groin and another on the top right side of my chest.

The operation went smoothly but I was very bruised afterwards and couldn’t’ walk for a week.

Now that it’s all over, I hope I’m cured.  There’s a one in 20 chance it could come back again, so I have to go for an ECG every year for the rest of my life.  I don’t think I’ll ever run a marathon, but normal exercise id fine.  It’s not genetic, so I can’t pass it on to my children.

When I think of how I was at risk for so many years, it’s scary.  I was so close to dying and didn’t realise it.

I think every young person who feels at risk should go and have an ECG because it could save their lives.  If my story inspires just one young persons life to be saved, I’ll be happy.

 

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