CredibleMeds for members with Long QT

Members with long QT syndrome may like to consider registering with CredibleMeds to be kept up to date with any changes to the QT drugs to avoid list https://crediblemeds.org/everyone/. We have recently received the following message through CredibleMeds: On January 14th, AZCERT added the anticancer drug Glasdegib (Daurismo) to the Possible Risk of torsades de […]

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 […]

Antony Eames

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 […]

Louise Dee

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 […]

Lucy Patey

Living With long QT syndrome I have always been a fit and active person, participating in many sporting activities – two of which were hockey and horse riding, family passions that I inherited. During my teenage years I competed at top level both on horseback and on the hockey field. Looking back, I was given […]

Jonny Goode

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 […]

Hayley Brown

Living with long QT syndrome I was 19 years old and had just failed my second driving test when my first and only attack happened. I ran through the garden and into the house where my mum was waiting nervously. I told her that I had failed and then went on to tell her I […]