'My mother... she always knew how to start something'

9th May 2019

This article is taken from our May issue of My Life magazine. You can read the whole magazine here, or to subscribe to receive a free copy via email or post please sign up here.

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Frustrated by the lack of information and support available to those affected by cardiomyopathy, Carolyn Biro launched Cardiomyopathy UK (first called the Hypertrophic Cardiomyopathy Association) three decades ago.

Her vision was to ensure that patients and their families received accurate information about their condition and had access to appropriate and effective care. Many GPs were unaware of the signs and symptoms of cardiomyopathy, resulting in a lack of appropriate referrals, which could lead to misdiagnosis and devastating outcomes. The genetic nature of cardiomyopathy was not widely recognised; thus, family screening was rarely initiated. Making matters worse, most local cardiologists lacked the education and experience to competently treat cardiomyopathy.

In an era when cardiologists were treated more like demi-gods, Carolyn started breaking down the barriers. “Cardiologists were not used to being challenged by their patients or being told what to do,” recalls Professor William McKenna, who helped Carolyn set up the charity with a small group of others sat around the kitchen table at her Hertfordshire home. “Carolyn knew a great deal about cardiomyopathy and the appropriate treatments. Her knowledge and commitment led her to confront physicians when she didn’t think patients were receiving appropriate care. It was an uphill battle, but the charity continued because of her dedication and determination,” he adds.

To read the full article in our May edition of My Life, click here.