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 […]
My story of being diagnosed with LQT in the midst of a pandemic by Ruth Williams
In April of this year, I was diagnosed with Long QT Syndrome (LQTS). In the midst of a pandemic, this was the most unwelcome conclusion to my ongoing investigations! In 2001, my sister Ellie died very suddenly whilst on a telephone call with me one morning. I found her body later that day with the […]
How has CRY’s research changed the way we understand LQT ?
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 […]
Tim Butt talks about his electrophysiological procedure (EPS)
Watch myheart member, Tim Butt, talk about an electrophysiological procedure he has recently had.
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 […]