Watch: Carrick mum and daughter on how they're supported by the Northern Ireland Inherited Cardiac Conditions Centre - with help from the Miles Frost Fund
A Carrickfergus mother and daughter have told of how a charity fund set up by the family of the late broadcaster Sir David Frost has helped them to access specialist care at the Northern Ireland Inherited Cardiac Conditions Centre.
Deena and Rebecca Robinson, who both live with hypertrophic cardiomyopathy (HCM), have been patients of the Belfast-based centre since 2018.
The unit has been recognised for its work at a British Heart Foundation event in London, after receiving major funding from the Frost family through the Miles Frost Fund.
The charity was set up to support BHF in memory of Sir David’s son, Miles, who died suddenly in 2015 aged just 31.
It raised £1.5 million to help make genetic testing available to families affected by cardiomyopathy across the UK.
In 2017, the Northern Ireland centre was the first in the UK to benefit from a share of the Miles Frost Fund.
Deena received her diagnosis of hypertrophic cardiomyopathy (HCM) at age 47.
The now 54-year-old told of how her own mother was first diagnosed with the condition after becoming unwell and being asked to be part of a research group.
Deena said: “After being diagnosed with HCM, I knew that my daughters might have it too. However, the testing centre means that you can be monitored, if we have any queries or concerns we can contact them for advice. Without the Miles Frost Fund, we might not have that support and so I’m very thankful to the Frost family.
“My mum became very unwell in her 40s and was eventually diagnosed with HCM. She ended up in a research group, and that identified that she had a faulty gene.
“Her mum had passed it onto her and had the condition too, although at that point it wasn’t known what the condition was. They then were able to determine that my mum’s mum had likely passed away with the same condition, which wouldn’t have been known at the time. “Then because my mum had the faulty gene and condition, I was invited into the research group; I was tested and found to have it. I have two daughters so they were then brought into the research group.
"My daughter Hannah was given the all clear and my daughter Rebecca was also diagnosed with the faulty gene and at the same time, diagnosed with having the condition.
“We’ve been coming to the unit since 2018 to be monitored for the progression of the condition but also for general guidance, advice and any support we need or concerns we have. Rebecca plays a lot of sport, she’s young and in her twenties and has a lot of life decisions to make having had the condition present itself so young.
“To have the support of the centre to give her guidance through her life and to know when treatment is needed is invaluable. Because of the centre’s treatment and intervention my mum is now turning 80 which is fantastic.”
Deena added: “It’s difficult to receive the diagnosis of a heart condition as it’s a life-long condition, but equally it’s comforting to know that we’ll be monitored, and the centre gives us great reassurance.
“We are very grateful to the Miles Frost Fund for providing the additional service. As a family through a couple of generations we’re benefitting from that and equally if Rebecca has any children, they’ll be tested early.”
Rebecca, who received her diagnosis of HCM at age 15, is a hockey player, gym-goer and loves sport – but has had to adapt some of her activities due to her condition. “I’ve always grown up playing hockey but when I was diagnosed, I had to change the way I played and adjust to take breaks when I need them and not push myself beyond my limits,” she said.
“I really enjoy sport, going to the gym and playing tennis and padel and the great thing is I can still do all of that, but I know now just to keep a check to make sure I’m feeling good and looking after myself.
“I track my heart rate through my smart watch and make sure if I’m too out of breath, I come off the pitch.
“I come to the centre annually for check-ups. As a young person I know it’s important that I keep the appointments and it means if I have any progressions and I can get treatment quickly.
“It also gives me peace of mind knowing that if I have kids, they can be tested. It is a condition that is very manageable with the right approach.”
Dr Alison Muir, cardiologist and clinical lead for NI Inherited Cardiac Conditions Centre in NI said: “The Northern Ireland Inherited Cardiac Conditions Service was the first in the UK to benefit from the Miles Frost BHF fund with the addition of an Inherited Cardiac Conditions Nurse Specialist to our team.
“This allowed us to increase our capacity to see more patients in Northern Ireland with inherited cardiac conditions, with a focus on those patients with cardiomyopathy.
“We now see over 1200 patients per year, both new and review patients and we commit to the long-term follow-up of these individuals as required by their clinical condition.
“It is a privilege to look after families with inherited cardiac conditions especially when our service has been supported by the Miles Frost family, a family who know first-hand how devastating these conditions can be.”
An estimated 9,500 people in Northern Ireland have an inherited heart condition with around 4,000 of them having hypertrophic cardiomyopathy.
Each week in the UK at least 12 young people (aged under 35) die from an undiagnosed heart condition.