‘There was no internet when I was diagnosed’

19th May 2019

This article is taken from our May issue of My Life magazine. You can read the whole magazine here, or to subscribe to receive a free copy via email or post please sign up here.

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In the 1980s Hugh Brazier had never heard the word cardiomyopathy.

It was while waiting as a patient to see Professor Bill McKenna at St George’s Hospital, London, in 1994, that Hugh Brazier noticed something pinned to a noticeboard – a leaflet advertising the Cardiomyopathy Association. 

“For the first time I had a sense of not being alone, and I joined,” Hugh recalls.

Before then, Hugh had hardly heard the term dilated cardiomyopathy (DCM).

“Looking back, I’m astonished at how uninformed I was in those early years,” he admits.

In June 1986, his brother Andrew had died suddenly while taking part in a fell-running race. “Andrew was 32, and because I was his identical twin I found myself in hospital undergoing tests, including an angiogram and a MUGA scan,” says Hugh.

“My coronary arteries were clear, but I had an enlarged heart and a reduced left ventricular ejection fraction.

“The cardiologist explained almost nothing to me, and it wasn’t until I saw my GP a few weeks later that I had any feedback at all.”

Hugh was referred to a different cardiologist for an annual echocardiogram. The new doctor was more supportive and communicative, but the word cardiomyopathy was barely mentioned. Still feeling rather lost, Hugh drew on his experience as a medical librarian to find out more.

“There was no internet then of course, so I looked in textbooks and journals – although I didn’t really know what I was looking for. I had no symptoms, and as far as I know my brother had never had any either."

To read the full article in our special 30th anniversary edition of My Life, click here.