Sara Catena was searching for support when she decided to put plans in motion to create a new group.
The Genetic Heart Group is available for anyone who has a genetic heart condition within the Hunter Region.
Sara lives with Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC), which makes living her life different to the majority of those around her.
“It’s a disease in the heart muscle, where the heart muscle starts to get replaced by fat and scar tissue, making it harder for the heart to pump properly, and it also causes rhythm disturbances,” she says.
“I’ve had moments where I’ve broken down and gone: ‘Why me?’ “But, after time, you figure out how your body is going to react and know the warning signs and the signals and then you kind of get used to it and what wasn’t the normal becomes normal.”
Sara met with Dr Anne Ronan, Angela Ingrey, Rachel March, Alichea Archer and Blake Glennie to brainstorm ideas for the support network.
It was in this meeting that the Genetic Heart Group came to life.
The participants decided to create a Facebook group to recruit members and spread the word that a support group for people with a genetic heart condition was available in the region. The group aims to encourage connections and helps members share their experiences.
“It’s nice to know that you are not going through all of this by yourself,” Sara says.
“Someone else has gone through the same thing or a similar thing and it’s a little bit comforting [knowing] people out there have the same condition or a similar condition to me [and] I can talk to them about it and not feel so alone and isolated.”
The group supports people living with ARVC, Brugada Syndrome, Catecholaminergic Polymorphic VT (CPVT), Familial Dilated Cardiomyopathy (FDCM), Hypertrophic Cardiomyopathy, Left Ventricular Noncompaction (LVNX) and Long QT Syndrome (LQTS). It also hopes to raise awareness.
Sara says that, once they have enough members, they’ll be able to organise face-to-face meetings for the chance “to meet and connect with one another”.
