My Hypertrophic Cardiomyopathy Story
Hi, my name is Jodie. I am 35 years old.
I am a Disability Support Worker and qualified Teachers Aide. I love my family, volunteering with the State Emergency Service, all animals; especially working with horses; and was diagnosed with Aspergers Syndrome (part of the autism spectrum disorder) when I was nine. I have Familial Hypertrophic Cardiomyopathy and a defibrillator.
What led to your diagnosis? What has happened since then?
I am the youngest of four girls. As my father’s side of the family had some heart related issues, I had genetic testing done when I was about three years old. Some doctors told my mother it wasn’t genetic and that she didn’t need to have us tested, however when we were tested it became clear two of us had the gene and I had the condition. Since then, I have had regular testing to monitor the thickness of my heart muscle.
I had my first defibrillator implanted at the age of 15 in 2005, then two additional surgeries in 2011. One for a lead replacement and the other for a new generator. More recently, a new defibrillator was implanted in 2025. While I have not yet required shocking, my device monitors and sends information, then paces my heart into a normal rhythm when required.
How does cardiomyopathy impact your life?
I like to think it doesn’t impact my life, but it has done and will continue to do so.
As a child, I didn’t participate in sport at school which the other children couldn’t understand. I could also spell Hypertrophic Cardiomyopathy by the time I was 8 yrs old. Some days I want to run a marathon, then remember my heart doesn’t like running… or any exercise really. The medication I am on keeps my heart rate low and metabolism slow, so I struggle to lose weight.
When I start new things, there is sometimes doubt from others as to whether I can or should be doing them. Sometimes a medical certificate is needed and sometimes just some education on my condition.
While there are things I cannot do and things that take longer to do, there are also things I excel at, like working with troubled horses, volunteering in the community, writing and directing children’s theatre shows, supporting others etc.
How has cardiomyopathy impacted your relationships (partner / family / friends)?
My condition has not impacted negatively on any relationships. My family and friends are all aware of my condition and are very supportive of everything I do.
My cousin has had the biggest and most positive impact on me. She also grew up with this condition and has been through so much, but is a strong and amazing woman who I know I can call on for advice or help. When I was 15 and refusing surgery, she got me through it.
Having lived with cardiomyopathy for some time, what is something you’d like to pass on to someone more recently diagnosed?
It may seem like the end of the world, and I remember feeling like my life would be ruined, especially when I got my first defibrillator which we named “Daphne”. I was 15 years old and told I couldn’t ride dodgem cars or go near electric fences or work on cars! Having Cardiomyopathy sounds terrifying, but I believe there are many worse things out there – there are so many things wrong with the world. Hang in there, look after yourself, but don’t hide away. Continue to live your life to the fullest. Respect your limitations but don’t let your diagnosis define you.
How has/can a patient support group assist?
As a child I didn’t fully comprehend the situation but thinking back to a terrified 15-year-old me, if I had not had the amazing support of my cousin who had been through it all before, my family and I would have been so lost.
I believe a patient support group can be very beneficial in learning about other people’s experiences and being able to talk things through. It makes a huge difference.