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 […]

Low potassium in the blood (hypokalaemia)

If you are ill and you vomit or have diarrhoea, your body loses some of its essential potassium supply. If you have long QT syndrome or Brugada syndrome, having a low level of potassium can make your condition worse. Therefore if you have vomiting or diarrhoea for more than one day, you should add a […]

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 […]