I’m Bayley, I joined this panel when I was around 17 and have been working with other young people since to create better resources for people in our situation.
My father was diagnosed with hypertrophic cardiomyopathy around 30 years old after having symptoms of breathlessness - amongst others. An ICD was fitted soon after and genetic testing revealed his brother also has the condition too. Ever since I was young I have had yearly genetic testing at Great Ormond Street Hospital, with a recent transition to BARTS to observe the growth of my heart, and have questioned genetic testing myself.
I joined the panel after the passing of a close friend from an undiagnosed heart condition, in the hope to raise awareness, educate myself and help others going through similar situations. Becoming a member has meant I've gained much more than I ever could have hoped to achieve. More recently I lost a family member to hypertrophic cardiomyopathy, which has given me even more motivation to spread awareness to as many people affected as possible, and to help those effected by heart muscle disease.