Lisa’s diagnosis of Long QT triggered a series of genetic tests for other members of her family too.

Lisa had just put her seven month old daughter to bed and was enjoying a glass of wine with a friend, when she had a sudden cardiac arrest. She was 23 years old.

She had a second arrest in the ambulance on the way to the hospital, and her family were warned to prepare themselves that she may never be the same again.

Fast forward 13 years and Lisa is now Mum to three children and living a fully active life.

“I’d felt a bit funny a few months before, but A&E couldn’t find anything wrong and sent me home. My husband is in the Navy, but luckily my friend was round when I had that first cardiac arrest. Her quick thinking saved my life.”

At hospital, Doctors were busy trying to find out a reason for Lisa’s cardiac arrest. When the delved into her family history they uncovered several relatives who had died of heart issues. That information prompted them to start genetic testing to see if Lisa may have inherited a cardiac condition.

The results showed that Lisa has a condition called Long QT syndrome which affects the way her heart beats.

Lisa’s diagnosis triggered a series of genetic tests for other members of her family too including her children. Her brother, her Dad and seven of his grandchildren were also found to have the same genetic variation that causes Long QT.

“It’s changed all of our lives”

Two of Lisa’s three children have Long QT. They take beta blockers but they also live active lives filled with lots of sport.

“We’ve learnt what we can and can’t do and how to look after ourselves. Everyone in the family has done CPR training and the girls always have one of us at every sports match. It’s the norm for us now.”

As a family they’ve focused their energies on raising awareness of Long QT and helping to raise money for the charity Sudden Arrhythmic Death (SADS) UK, which funds research and medical equipment to prevent premature sudden cardiac death.

Lisa has been working with the NHS South East Genomic Medicine Service to educate the NHS workforce about Long QT and genetic testing.

“I didn’t survive to live in cotton wool and I am determined that we all live life to the full. Genetic testing gave us the knowledge and knowledge is power.”

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