I chose the title ‘The Rhythm of her Heart’ because that was the first song I wrote when I was diagnosed with my heart condition, Long QT Syndrome, at 16 years old. Being a teenager and diagnosed with a life threatening heart condition is not something one can process easily. I used music to process the shock, fear and anxiety I suddenly felt.
October 2018, aged 14 and asymptomatic- I was taken to a CRY screening as a precautionary check by my mum at St. George’s Hospital. Little did I know that that test would be the beginning of a whole new journey in my life. I was told that they had picked up an abnormality and they thought it would be LQTS,
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 phone still in her hand.
My Long QT story – by Jodie Pearson, age 36 I was diagnosed with Long QT1 in 2010 when I was 27 years old. A close relative had been having “funny turns” at work with palpitations. Following one of these funny turns my relative went to see our GP, which my relative never does of their own accord. Anyway following
It’s been 18 years since I was diagnosed with long QT syndrome and had my very first permanent pacemaker implanted; and 25 years since my father found me unresponsive on the bathroom floor, before resuscitating me – I later found out that 95% of females who suffer their first major ‘event’ do not survive. My father’s quick thinking had literally
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 but he suggested it was
Tony Eames wrote his story to be included in the myheart booklet which was launched in November, 2013. I had my first episode of fainting at 4 years old. From then on I passed out regularly. Sometimes I passed out several times a day. During this time I was not allowed to do any school sport or go out in
Living with long QT syndrome Hi, my name is Louise. It all started in 1990 when I was 8 yrs old. I woke up hearing an alarm clock and realised it was my mother’s for work, so I got out of bed and went to turn the alarm off. When I went into her bedroom I turned the alarm off
Living with long QT syndrome I love Sport! Any kind of sport and ever since I remember I have spent most of my spare time either hitting a ball, pedalling a bike or running around somewhere. It came as a great shock to me when I was diagnosed with long QT syndrome at the age of 23. The way I
