Tag: patient perspectives

News

Patient perspectives: how a quest for better recognition and care...

Around 40% of all patients undergoing angiography are found to have normal coronary arteries or non-obstructive coronary artery disease (NOCAD). This often results in ongoing issues in accessing effective care and treatment. Four women confronted with inconsistent medical advice decided to take matters into their own hands by forming a patient group to bridge the knowledge gap.

The International Heart Spasms Alliance (IHSA) was officially set up in 2021 by Terri Shumaker, a single mother of two in the United States, Cindy McCall, an Australian nurse, Sarah Brown, a retired British midwife, and American Annette Pompa. It aims to advocate for people with heart conditions that are frequently undiagnosed/misdiagnosed and misunderstood by both patients and clinicians.

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Real Patient Stories

Sinéad’s story

My first episode caught me completely off guard on a Sunday morning in 2014. I was an active, healthy 35-year-old mother of 3. It felt like what I imagined having a heart attack would feel like. After a minute or two it stopped as suddenly as it had started and I got out of bed to start my day, I had experienced palpitations before and brushed it off as a once off.

I had about 8 more episodes before lunch time and made a deal with myself that if it continued, I would call an ambulance. I was a busy mum and didn’t want to be ‘dramatic’! It resolved by 2 p.m.

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Arthur’s story

My name is Arthur. I am a Scot but have lived in London for nearly forty years.

In 2014, I had my first heart attack. In the following six years, I went to A&E at least twice a year. Every time, I was sent home and was told it was reflux.

My own doctor in about 2015/16 put me on half an angina pill. When I was in hospital, I was told by the cardiology doctors that I did not need it as I never had angina at all.

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Dima’s story

March 3rd, 2021 was the day that changed everything. At 55, I had a busy counselling practice and a few other projects on the go. The pandemic was causing anxiety for many of my clients and in my private life. I had a lot of stress of my own: there were safety issues in the building where I lived, and I was looking for a new apt. Despite this, I thought I was handling it well. I was fairly healthy, I walked daily, ate well, meditated and didn’t smoke or drink.

I started to experience heavy fatigue towards the end of 2020 but told myself it was normal considering all that was going on in the world.

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