Nancy's story - research revealed a hidden killer in the family

Cathie and Nancy

Nancy and her sister Cathie

Our story starts with a death in the family. Our youngest sister, Dora, died of a cardiac arrest when she was 26. Nearly ten years later we found out why – we had a killer gene in the family.

I was in my forties and was fainting and my heart was sometimes racing. I was diagnosed with a heart condition called ARVC, which damages the muscle of the heart and can affect the electrical circuit that keeps your heart beating. That’s what Dora had, and why she died so suddenly, and so young.

Devastation in the family

It’s an inherited heart condition, and it’s caused devastation right through our family. My uncle died in his fifties, and my cousin died while waiting for a heart transplant.

I am one of six sisters, and we discovered that our mum, Ruth, had passed the faulty gene to the three youngest of us. Cathie and I are the two surviving sisters, and we both have ICDs to deliver a shock to our hearts in case they go into a dangerous rhythm.


I’ve had to go from taking part in extreme sports to playing bridge and painting. I can’t climb stairs or walk for more than half an hour without getting out of breath.

This condition doesn’t stop with me. One of my three children has the faulty gene, and now he and his wife are thinking about whether they should even start a family.

Family members who have the faulty gene have very curly hair and dry skin, and BHF research is delving into how this links to our heart condition. This gives us hope for new treatments in the future.

By Nancy Williams

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