As a young healthy woman with ARVC, Rebecca Taylor shares her campaign with Smart to raise awareness of genetic heart conditions.
In February 2017 Rebecca Taylor diagnosed with a rare genetic heart condition called Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC). After her discovery of the condition, Rebecca expressed her shock, “This was a real bolt out of the blue. I was 34 years old, I had always looked after myself, exercised regularly, I had a good diet and I've never had any other health issues. It was a bit of a mystery.”
As far as Rebecca was aware, no one in her family had any heart problems or died young. However, what she did find out was how incredibly lucky she was to be alive as 80 percent of cases similar to Rebecca’s are found post-mortem.
After her diagnosis, Rebecca started to research her condition. It was at this point that she realised there was a lot of uncertainty around the condition. Rebecca speaks of her findings, “It is quite a rare condition affecting between 1 in 1000 and 1 in 5000 (even the statistics are unclear), because of this they are still learning about it. It affects each individual differently. Often when things are unclear it can leave us feeling a bit lost and isolated. I was very aware that this, along with the internal defibrillator (ICD) implanted in my chest can lead to anxiety and depression. Which is what made me immediately want to speak out about it and ultimately help others going through the same.
“I decided the best way to do this was to put all my focus into raising awareness about conditions like mine, to try and prevent more sudden deaths and to offer support for others. I have been working with both The British Heart Foundation and Cardiomyopathy UK as much as I can to help try and change perceptions of the kind of people who have heart conditions."
As well as working at Tes Rebecca is also an actress. “It made sense for me to try and develop a play alongside other women with heart conditions. Sadly I haven't managed to secure sufficient funding from The Arts Council this time as the competition is so fierce and the pots are so low, so I am trying to raise the funds myself to pay for the venue and the cast/writer and other practitioners time. I feel like I have survived for a reason and I want to make this project my reason.”
Rebecca’s story continues as she works hard to reach her target of raising £5,000. If you would like to support Rebecca, you can read her personal blog here.
You can support The Beat Goes On Campaign and donate on Rebecca’s Just Giving Page.
Thank you x