I am 43, I live in Devon and I am at risk of dilated cardiomyopathy because of my family history.

Scott, pictured above right, shares why he has left Cardiomyopathy UK a gift in his will.

I personally support Cardiomyopathy UK in various "little" ways. I have a collection tin in my shop, a standing order where I give a small amount each year and I buy the raffle tickets. But I still felt I needed to do more to give back to the charity that has supported my family and I so very much over the past twenty years.

My story with cardiomyopathy started in the mid 1990s when my Aunty Joan, aged 55, was taken into hospital with a heart complaint that turned out to be dilated cardiomyopathy. None of us had heard about it and we didn’t have Google then. The hospital advised her to mention it to the rest of her family and for her six siblings to get a GP referral for an ECG and Echo, which was a lot to do when she was already ill herself.  If any signs of DCM were found, then their respective children would also need to be screened.

I remember my Dad explaining the situation to our Doctor and he confessed that he had never heard of this disease and would need to look into his old medical books. Until then I had assumed that GPs knew everything. Little was known about the disease back then compared to now – mostly, I believe, thanks to Cardiomyopathy UK for raising awareness.

My Dad was the only other sibling of six to be diagnosed with DCM. My brother and sister have check-ups every few years. I have had a few blips when things were not looking great,   but as of late things have improved and for the first time I have been moved on to three yearly screenings.

I must say that my local hospital has been wonderful from day one, especially our consultant who has been with us for over twenty years. He is under the impression that, in our particular family, cardiomyopathy appears to present itself at around the age of 50.

A few years ago Cardiomyopathy UK used to charge a membership fee, but this was scrapped a while ago which made me think. Unlike some charities, Cardiomyopathy UK went the other way and decided people did not have to pay to join – they wanted their information to be free for everyone. Because of this and for all the free help and support they have offered my family and some close friends with HCM, I decided that I would leave a legacy to the charity when I renewed my will. I feel this is a good way to leave money to a charity that has helped us so very much. However, I do hope that this will not be paying out until I make it to the age 101!

To end on a positive note, I can report that both my Dad and my Aunty in their 70’s and are doing fine in the heart department - although they do have other unrelated medical issues.

Who knows? Perhaps one day there will be a cure and cardiomyopathy might be wiped out completely.  

We are so grateful to those who leave a gift in their will to Cardiomyopathy UK, ensuring that we continue to make a difference for future generations.

For more information about how to leave a gift in your will, please get in touch with Sheila Nardone on 01494 791224.