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New service will help extend lives of families with hereditary heart issues

ICC 2023

A mum and daughter who were diagnosed with hereditary heart failure years apart have welcomed the introduction of a new regional service for patients with inherited cardiac conditions (ICC), which will help prolong lives.

The ambitious service, delivered by the world-renowned Cardiothoracic Centre (CTC) at Basildon Hospital, part of Mid and South Essex NHS Foundation Trust, will help identify cases much sooner, meaning people and their families are treated quicker, stopping their heart disease getting any worse.

Previously patients with ICC may have been treated by cardiologists across the region, or have been referred to a hospital in London for treatment or referred to their GP.

Dr Jason Dungu, Consultant Cardiologist, explained how this new initiative will improve the lives of patients impacted by this condition. He said: “Our new service means that all patients across Essex will now be seen at the CTC allowing them to be cared for by the same team at each appointment, which creates a more co-ordinated treatment plan and provides a better patient experience.

“ICC affects around one in 250 people and includes conditions such as heart muscle disease, cardiomyopathy, and heart rhythm problems, which need active treatment to prolong a patient’s life. The service will also contact, screen and, where necessary, treat the relatives of people who have heart disease.”

And it was Dr Dungu who diagnosed mum and daughter Donna and Natasha James, who are still under his care, they wanted to share their stories to help raise awareness.

Donna, 60, from Brentwood, was an active mum, who kept fit and didn’t drink and has never smoked, but one day almost 20 years ago she collapsed and had a seizure whilst unconscious.

She said: “My collapse was like a bolt from the blue, no one could find anything wrong with me, doctors initially thought it was because I’d not eaten enough and I was tired. Also, because of my age they did not consider a heart condition.”

More episodes followed and Donna found out she had an enlarged heart, she said: “My heart is like a swollen balloon, 17 years ago after my heart failure diagnosis I had an internal defibrillator fitted in case I have another cardiac arrest, and I take prescribed medication to help to manage my condition.

“I’ve now only got 20 per cent use of my heart, I still get tired so quickly though, even going up a flight of stairs can be a real struggle, so I have to pace what I do each day. Although it is not getting better it isn’t getting worse, and that is thanks to the first class care I have received at Basildon Hospital since my diagnosis.

“They really fight your corner, there is continual research and new medication being brought out, so what is available is changing and improving all the time and helps me be the best I can be.”

Aged 16, Donna’s daughter Natasha, now 29, from Basildon, went to another hospital with chest pains, but at that point it didn’t occur to anyone that this could be caused by a heredity disease.

It wasn’t until Natasha had more episodes and was admitted to Basildon Hospital under the care of Dr Dungu, who linked the conditions.

Natasha said: “I had a third episode in 2019, but Basildon Hospital have been brilliant and I’m having check-ups every three months. I’ve now got about 40 per cent of my heart function and some days are better than others. If the weather is humid or dry it can have a real impact on me.”

Donna explained why she and her daughter wanted to share their story, she said: “We want to educate and make other families aware, so that nobody ends up in our situation. If their disease is caught much earlier, they can get treatment sooner and it can be slowed down.”

Natasha added: “Young people think there can never be anything seriously wrong with them, or that it will just fix itself, but it is now too late to correct the damage to my heart. If highlighting our story and raising awareness of this new service helps just one person, then it’s worth it. You think something like this can never happen to you.”

Patients who think they may be at risk of ICC should contact their GP who can put together a medical history and, if appropriate, refer them to the ICC service.

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