Panel Member

Hi everyone, I’m Rosie and I live in Bristol.  

I first found out about my family’s heart problems when my aunt, my father’s younger sister, died unexpectedly at the age of 49 in 2011 of undiagnosed dilated cardiomyopathy (DCM).  

My father also had an erratic heart-beat, which he had been told was harmless, and his mother had also died of a heart attack unexpectedly at 54. Based on medical advice my father and his older sister were both then urgently fitted with ICDs. Subsequent investigations revealed that both my father and his sister have the Lamin A/C gene mutation and DCM. 

I have been screened annually since 2012 and took the gene test in September 2017. My results showed I also have the Lamin A/C gene mutation. It is very possible I will develop DCM in the future and the gene mutation means I have a higher risk of sudden cardiac death when I start displaying symptoms. I have not been diagnosed with the condition yet, as my tests have returned normal. I am regularly screened to ensure that as soon as I do develop symptoms, I will be treated quickly 

I remember feeling quite lost when I was told I had the Lamin gene so I sent Cardiomyopathy UK an email about getting involved in volunteering.  

When I was asked if I wanted to join the Youth Panel it was the perfect fit for me because I have been able to meet people affected by cardiomyopathy in many different ways, I have learnt so much! I am very pleased to be working with Cardiomyopathy UK and such a lovely group of young people.