I have a heart condition but it’s not the end of the world!-by Gem O’Reilly

Since being diagnosed with my heart condition at 16 years old, I’ve been trying to understand my body, to understand my limitations and capabilities.  That has stemmed into my life in many ways, particularly when it comes to challenging my body and perceptions of what makes a healthy lifestyle.  It has led to me running […]

I was diagnosed with LQT after 20 years..by Rebecca Scheffe

My name is Becky and I was diagnosed with Long QT Syndrome in 2010 when I was 37 years old. At the age of 17, I had a terrible experience as I went to bed one evening and had my first seizure, it was so terrifying I thought I was dying. The doctor was called […]

Clipper for CRY by Jennifer Hill

My name is Jennifer Hill, I’m 32 and writing this article on my return from Australia. Holidays in Australia may conjure up images of sun, sand, surf, sightseeing and sipping cocktails but for me there was endless sea salt, giant ocean swell, soggy clothes, battling storms in the Southern Ocean, relentless sail hoisting and constant sleep […]

Emmerson Hird

On Wednesday 6th June 2012 my 17 year old nephew Emmerson Hird survived a cardiac arrest. Emmerson had been playing upstairs on his X-box with his girlfriend Micha. As he went to get up he fell down onto her. At first she thought he was messing about but quickly realised something was wrong and shouted […]

Jessica Goddard

Living with long QT syndrome Jessica Jane Goddard was born on the 27th July 2007. She was 3 years old when in May 2010 we received a phone call that would change her life forever… My name is Rebekah Goddard and I am Jessica’s mother. I was diagnosed with long QT syndrome in July 2001 at […]

Rebekah Goddard

Living with long QT syndrome Even at the age of nine the signs were there, but no one realised what they meant. I recall going home from school near to tears as I had, had a ‘panic attack’ in the school assembly hall…. yet again. My heart pounded and I felt sick as well as […]

Drugs to avoid

In several heart conditions, particularly long QT syndrome and Brugada syndrome, certain medicines or drugs can cause problems and trigger dangerous heart rhythms. These should therefore be avoided. Unfortunately, sale there is a rather long list of these! However a compressive list is available on-line, which is regularly updated: For long QT syndrome: http://www.sads.org.uk/drugs-to-avoid Members with […]

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