'I got broken heart syndrome after losing my dad'

When Michele Canning developed chest and arm pain on her way to a routine doctor's appointment in January 2022, she presumed it was indigestion.

Her GP sent her to hospital with a suspected heart attack.

But Michele, aged 49, was diagnosed with broken heart syndrome.

Broken Heart Syndrome, also know as takotsubo cardiomyopathy, is a sudden form of acute heart failure which is estimated to affect as many as 5,000 people in the UK each year.

It's different from a heart attack caused by blocked blood vessels, but has similar symptoms, including breathlessness and chest pain.

It is usually triggered by extreme emotional or physical stress and mostly affects women.

Often, an unhappy event - such as bereavement - is the trigger, but exciting occasions, such as weddings, lottery wins or a new job, have been linked with it too.

While Michele had heard anecdotes of people dying from a broken heart after the death of a spouse, she knew little about the condition and was shocked by her own diagnosis.

"I am 49, I was a vegan for about seven years, I don't smoke, I don't drink very much and I go to a personal trainer twice a week so I was struggling to understand," she said.

Michele's consultant asked her if she had been through anything stressful.

"My dad had died the previous October and my youngest had gone to university the previous September so I suppose they were two very monumental life events for me.

"But I think I manage stress quite well and I am fairly emotionally resilient so I was shocked that stress would manifest itself in a physical manner and wholly unexpectedly."

Michele said she was particularly perplexed by the passage of time between the period of stress and the onset of her illness, which she said raised questions for her about the long-term impact of grief.

"I still find the diagnosis incredible as usually broken heart syndrome is described as a sudden rush of adrenaline which shocks the heart.

"For me it was about working out how something that happened three months previously had ended this way."

Michele believes there has not been enough research into the condition, which mostly affects women.

"The most difficult thing is having to manage a condition that they don't know very much about," she said.

"The triggers are so many, yet it affects so few but it happened to me.

"That is a lot to process and creates huge fear and I am normally one to get up and get on with things.

"The further I get away from it the less fear there is and I try to live my life as normally and as best I can."

Michele said her experience had highlighted to her inequalities in the health system around issues that affect women such as menopause, miscarriage and heart disease.

She said it showed the need for a wider health care strategy for women.

"Broken heart syndrome is probably one of the most neglected areas of cardiology. I don't think it is any surprise that this is a condition that mostly affects women."

Professor of cardiovascular medicine and consultant cardiologist Dana Dawson has led research at Aberdeen University into broken heart syndrome.

Prof Dawson said it was a diagnosis made by people well before it was recognised as a true medical condition by doctors.

Its recognition was increasing due to improved research, she said.

In Scotland, the first registry of takotsubo patients is being developed.

"Ten years ago this would be something rare, something you would see once in a lifetime. It was a curiosity more than anything else," said Prof Dawson.

"Scientifically this condition connecting the brain and the heart is absolutely fascinating.

"There is no known predisposition that gives us any indication as to who specifically will develop this.

"It could be somebody who copes very well and then they have a moment when signals don't connect in the brain like they normally do.

"Such patients have been misdiagnosed in the past, they have been wrongly told they have had a heart attack.

"How could we not have recognised something that has been there the whole time?"

Fearghal McKinney, head of British Heart Foundation NI, which has funded £1.8m into takotsubo research and recently announced funding for a trial of the first treatment for the condition at the University of Aberdeen, said there was often the assumption that heart disease was a male disease and women were not at risk.

"This is very much false, in fact in Northern Ireland twice as many women die from coronary heart disease than breast cancer," he said.

"We need to tackle the myth that only men have heart attacks."

The Department of Health was unable to provide statistics on the number of people in Northern Ireland who have had broken heart syndrome.

It said gender inequalities or specific health needs in Northern Ireland were addressed by specific strategies or through service delivery, and there were no plans to develop a specific women's strategy.

"The Department already ensures that, in the development of health promotion strategies and plans, we include relevant actions targeting women, or men, where there is a difference in behaviours or outcomes," the department said in a statement.

"There are a number of gender specific conditions for which health services are available within Health and Social Care Trusts while the Public Health Agency (PHA) commissions a wide range of services on behalf of the Department."

The department said services to meet the needs of women in Northern Ireland included:

"The department will continue to work together with the voluntary sector and other government agencies in the development of services which meet the needs of the population and which, where necessary, address specific issues impacting on the health of women."