Panel Member

Hi I’m Ben! I’m 23 and from West Yorkshire. I found out that I have the Lamin A/C gene which causes dilated cardiomyopathy when I was 12. It was a simple blood test which came back positive for the gene, and I need to have regular screenings at local hospitals as a result. Although I am currently asymptomatic, there is still a strong chance of developing dilated cardiomyopathy due to having the gene. I was tested for the gene when I was 12 years old because this was around the time in which my dad was diagnosed with DCM and fitted with a pacemaker.

There is a strong family history of DCM in my family. I never knew my dad’s mum, my grandma, because she died of a then unknown heart condition. My dad inherited the condition as did two of his siblings. They all sadly passed away at similar ages. The screenings which I have could involve echocardiograms, ultrasound tests and wearing 24–72-hour heart monitors to check for any arrythmias. Other people in my family also conduct screening tests to check if they have symptoms of the condition.

The tests have not shown any abnormalities in my heart rhythm so far, but the family history suggests that strong symptoms are likely to develop later on due to the gene. I understand that the condition is something which is largely out of my control, but it does worry me a bit. The Cardiomyopathy UK group have been really helpful, and it is a pleasure to work with them. I still try to do as many things as I usually would and regularly ask my consultant at the Leeds General Infirmary if I would be able to take part in certain activities. With this in mind, my consultant provided medical consent for me to complete a skydive later this month to raise funds and awareness for Cardiomyopathy UK. My mum also completed the Great North Run to raise funds for the charity so that we can continue to give support to everyone affected by the disease. I try to do as much as possible while I still can really.

My family and friends also continue to offer a lot of support which is very much appreciated, and I look forward to working with many more young people in the coming years!