Ewan was diagnosed with hypertrophic cardiomyopathy (HCM) in 2008. Following his diagnosis, his family were referred for genetic testing which revealed that his mum, eldest brother Mark, his niece, and his youngest son all carried the gene. His brother Mark sadly passed away at the end of 2022, and Ewan has shared their cardiomyopathy journey with us.
The impact of cardiomyopathy
I was diagnosed with hypertrophic cardiomyopathy back in 2008 and as a result, had to give up football and limit my exercise. Following my diagnosis, all my family were referred to a genetics clinic for testing. The genetic testing revealed that my mum, my eldest brother Mark, my niece, and my youngest son all carried the defective gene.
The impact of cardiomyopathy was no longer just with me, but with all the family members mentioned above. They will now have to have regular screening and monitoring for the rest of their lives to assess the progression of their condition which can vary from person to person.
Since my diagnosis, I was fitted with an ICD in 2017 and put on medication, unfortunately, my brother Mark lost his life to the condition on the 27th of December 2022.
Remembering Mark
Mark was the eldest brother of the 3 of us (Mark 46, Ewan 44 and Adam 39). He is also the father to three girls - Amy, Emma and Grace and husband to Danielle. He was a double-winning captain with his local amateur football team, Stonehaven Athletic, a former club secretary and at the time of his death he was a coach and a member of the management team. He was also a keen cyclist and covered thousands of miles each year, often raising money for various charities.
He had an infectious smile and was always there for anybody. He was someone you could rely on and was always there to help. He was a family man, a Stonehaven legend, and a great friend to many.
The diagnosis
As I had the condition, I was fully aware of cardiomyopathy before my brother passed away. At first, it was quite a daunting thought to be diagnosed with a heart condition at a relatively young age, but speaking to my cardiologist and viewing the Cardiomyopathy UK website and literature, it became apparent that you could go on and lead a relatively normal and full life with the condition.
To my knowledge, Mark never experienced many symptoms. His wife Danielle said he had an episode a couple of weeks before his death where he complained of a slightly elevated heart rate and feeling unwell. When he got home from work that day he had to go straight to bed. That is the only instance I can recall of him complaining of any symptoms.
Mark was diagnosed with HCM because of genetic testing and further screening at the cardiology department at ARI. He was also advised that his condition was very mild and that he fell into the ‘low risk’ category. He was advised, at the time, to carry on with his football and cycling and that he would continue to be monitored on a regular basis.
After my initial diagnosis and the subsequent genetic testing, those affected were referred straight to the cardiology department. So, any diagnosis did not take long after the defective gene was discovered. It looks like it came from my mother’s side, but as both her parents are deceased, we do not know how far back this went. The whole genetic testing process was quite straightforward, and we were always kept well informed. Once they knew who carried the gene, they notified the relevant people straight away and referred them to the cardiology department for further analysis.
Living with cardiomyopathy
After my diagnosis and further testing, I was classed as a ‘high risk’ patient and was routinely monitored. Due to the severity of my condition, I was told to stop playing football and limit the intensity of my exercise. At that point in my life, it was hard to take as I was captain of my local junior football team and had to give all that up instantly. Then to find out later, that my youngest son carried the gene was also very tough to take as I knew the impact it was going to have on him for the rest of his life.
Mark’s diagnosis didn’t really impact him too much. As he was classed as ‘low risk’ and was allowed to continue with his football and cycling, nothing really changed much for him. He was understandably concerned that his middle daughter Emma also carried the gene but apart from that he was always quite relaxed about the condition (that was the feeling he gave out anyway). Even though Mark was classed as a ‘low risk’ patient he was routinely checked and attended all his appointments. The hard part about all of this is that Mark knew about his condition and was getting monitored for it. Mark’s consultant at the hospital always classed him as ‘low risk’, but despite all this, he still passed away during a morning jog with his eldest daughter Amy.
Losing Mark at such a young age has had a profound effect on the whole family. Our Mum has lost a son, Danielle (pictured with Mark) a husband, us a brother and his children a dad. The impact this has had will be with us all for the rest of our lives.
Raising awareness
We began our fundraising journey several years ago, holding a fundraising ‘Deal or No Deal’ night which raised over £3000 for Cardiomyopathy UK. Other members of the family have participated in other events and raised other small sums for the charity.
We had a casino night on 29th April, organised by Mark’s football team. The proceeds were split 50/50 between the club and the charity which meant we managed to raise over £2000 for Cardiomyopathy. We plan to hold more events throughout the year and into the next. A race night and a charity football match are just of some of the ideas that have been proposed. Adam is also looking to complete a number of walking challenges. Keith Stephen, one of Marks’s best friends is completing several cycle events this year. He recently completed the Loch Ness Etape event (pictured). Mark’s daughter Grace is also hosting a coffee morning, and her sister Amy is taking on The Scottish Half Marathon in memory of him.
Marks Just Giving page recently hit £11,000, and Keith has raised over £1000 so far on his cycling page. This will all go to Cardiomyopathy UK to help keep up their support work and raising awareness of the disease.
For anyone affected by this condition, my main message would be to communicate. Let your loved ones know if you are feeling unwell, pick up the phone and speak to your consultant or someone on the online support or helpline. Don’t be scared to ask for help and discuss any queries or changes in your symptoms with the hospital as soon as you can. There are thousands of people with this condition and only by communicating with each other will we raise awareness and make further inroads into understanding the disease.
Hopefully one day they will find a cure/treatment for the condition or maybe there will be a breakthrough in the ability to modify the defective gene so that it doesn’t develop into cardiomyopathy.
We know that a diagnosis of cardiomyopathy can feel overwhelming and frightening. We often hear from our community that hearing the experiences of others and their families can be a lifeline, helping them to feel reassured, informed and less isolated. If you would like to share your story, click the link below.