The inheritance of hope curing genetic heart disease now within grasp – British Heart Foundation

Max Jarmey, 27, took part in our latest Live & Ticking event alongside his cardiologist, BHF Professor Hugh Watkins. Professor Watkins spoke about the 30 million research project hes leading, which aims to find a cure for genetic cardiomyopathies. Max talked poignantly about the loss of his dad and the hope this research has injected into his future.

Max Jarmey inherited his dads calm demeanour and reflective nature. He also inherited from him a serious heart condition. But the full extent of this less visible inheritance a type of genetic cardiomyopathy would remain hidden to Max until his dad tragically died aged just 53.

Growing up we knew dad had some heart problems, says Max, but he never told us exactly what it was.

Max has since learnt that his dad, Chris, realised something was wrong when he experienced an arrhythmia a potentially dangerous abnormal heart rhythm when he was 40. Max was a baby at the time.

This scare led to Chris being diagnosed with arrhythmogenic right ventricular cardiomyopathy, or ARVC. If one of your parents has a faulty gene linked to this heart muscle disease, theres a 50 per cent chance it will pass down to you.

Around this time, Chris, who was always very health and diet conscious, stopped running and playing competitive sports. But Max says he never really noticed anything different about his dad.

He was always such a calm and level-headed person, and I understand now that after his diagnosis he focused on what he could do, like yoga and lots of walking, rather than what he couldnt.

Chris also continued doing what he loved for a living. He taught Shiatsu, a type of massage based on traditional Chinese medicine, as well as a meditative kind of Tai Chi, a form of shadowboxing.

He wrote lots of books on these techniques and was very knowledgeable about Chinese medicine, says Max. He also set up the European Shiatsu School that brought the practice to the west.

It all changed, though, on a Sunday afternoon in 2008 when Chris suffered a sudden cardiac arrest, brought on by his ARVC. Max was 13.

Dad had always been a big influence on me, and it was really tough because suddenly I didnt have that father figure to draw on their experience and learn from.

Chriss death set in motion a series of medical tests and screenings over the next five years that ultimately led to Maxs own diagnosis of ARVC.

At 18, his life was upended again.

Max was now one of the 260,000 people in the UK living with an inherited heart muscle disease. Globally, its estimated one in 250 people live with such a condition.

He recalls leaving the hospital after getting the news, sitting in the car with his mum in the carpark when he broke down.

It was dawning on him that, at this age when most of us are finding our place in the world, if he was to try to slow the progression of the disease he would have to give up so many things he loved.

By this stage Max had become an accomplished mountain biker and hockey player. But strenuous sports and activity can often exacerbate the condition or, in some cases, lead to a sudden cardiac arrest.

He also started googling and researching the condition after he was diagnosed. This terrified him.

However, his cardiologist Hugh Watkins, also a British Heart Foundation professor, gently conveyed to Max the precautionary measures needed in order to manage the condition. Professor Watkins words and guidance offered Max some peace of mind amidst his inner turmoil.

Shortly after his diagnosis Max had an ICD fitted a mini defibrillator placed under the skin that shocks your heart back into a normal rhythm if it detects a dangerous abnormal heart rhythm.

His younger brother Tom was also found to have the condition. But his older brother and sister, from their screenings, dont show any signs of it. Genetic testing confirmed that only Max and Tom had inherited the genetic spelling mistake from their dad.

Over the years, Max and Tom have both been shocked by their ICDs many times. Its a painful reminder of how serious their condition is and, indeed, how crucial and lifesaving the little device under their skin is.

Recently, Max heard about another possible lifesaver CureHeart. Its the most ambitious BHF research project in the history of the charity.

Professor Hugh Watkins and his renowned international team have been awarded 30 million their aim is to find a cure for inherited heart muscle diseases such as the condition Max lives with, and the condition that stole his dads life.

The CureHeart team won the award after a rigorous global competition, the BHFs Big Beat Challenge. The best scientists and researchers from across the globe were invited to lay out what they believed to be the next transformational leap in cardiovascular research. And CureHeart won the day.

Its pioneering approach will use ultra-precise gene therapy technologies that could edit or silence the faulty genes that cause these deadly conditions. Put simply, the team endeavour to correct the spelling mistakes found in these faulty genes.

This is our once-in-generation opportunity to relieve families of the constant worry of sudden death, heart failure and potential need for a heart transplant, says Professor Watkins.

The 30 million from the BHF will give us the platform to turbo-charge our progress in finding a cure so the next generation of children diagnosed with genetic cardiomyopathies can live long, happy and productive lives.

Within years, its possible that a simple injection given to someone living with ARVC or another type of inherited heart muscle disease will cure them of the condition.

For Max who now works as a product manager for a financial services firm and is in a loving relationship worry and fear has given way to a sense of optimism.

When I think about my future, the decision to have children and their future, CureHeart could make that decision easier. My children might never have to suffer like I have with this condition. This project gives me hope. Thats what the BHF is funding hope.

Beyond everything else, though, May says: All I really want to do is live a normal life and just go for a run.

LEARN MORE FROM PROFESSOR HUGH WATKINS AND MAX JARMEY

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The inheritance of hope curing genetic heart disease now within grasp - British Heart Foundation