The day this heart condition changed my life

Stephen with children

Stephen was devastated when he was diagnosed with hypertrophic cardiomyopathy at the age of 19. He was applying to do a dance degree when a routine medical picked up that there was a problem.

“My diagnosis came as a complete shock. Completely out of the blue.

I was a teenager, and it probably took me two years to get over it. I’d always been fit and into sport.

I never had any symptoms – still don’t – I feel fine. But there is obviously something there, hidden inside me.

My family handled the news that it was an inherited condition quite well. 

My parents got tested straight away but unfortunately there were unable to find the faulty gene in either of them.

Doctors thought I could be at risk of a cardiac arrest, so I had an ICD fitted. In case my heart stops beating, it will shock it back to a normal rhythm.

I went on to get married and have a daughter, Grace, and a son, Joseph. 

They will need to be tested one day.

I hope it won’t be the same shock for them as it was for me. But if they do have the condition, they can receive treatment which potentially could save their lives.”

Other people with hypertrophic cardiomyopathy

More information

Find out more about hypertrophic cardiomyopathy or about living with the condition.

Our Genetic Information Service offers information if you or a member of your family has been diagnosed with or has died from a suspected inherited heart condition.

Help end the heartache

With your support, the Miles Frost Fund can help us end the heartache caused by hypertrophic cardiomyopathy.

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