The rhythm of her heart – raising money in aid of CRY
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.
The second chance at life has made me appreciate how delicate life really is…by Emma Green
Whilst in hospital, I was diagnosed with Long QT Syndrome, a rare genetic heart condition that I had never heard of. Very few people are affected by my type of Long QT Syndrome and like the minority of people who also suffer with this, I have learned to adapt and live with this condition, making the most of the path that I have been given.
myheart hard copy newsletter-2023
Members who subscribed to the myheart hard copy newsletter should have now received it. Read the online version here. Subscribe to myheart mailings here.
Never Miss a Beat
By Gem O’Reilly It’s a funny thing being told you could potentially go into cardiac arrest for something you can’t necessarily see or feel. It’s a surreal, intangible experience and very scary. That’s what happened to me when I was 16. I was diagnosed with Long QT Syndrome, which basically means my heart struggles to […]
Changes to the QTdrugs List and List of Drugs to Avoid in cLQTS
Members with cardiac conditions 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: April 29, 2024 Re: Changes to the QTdrugs List and List of Drugs to Avoid in cLQTS Dear CredibleMeds […]
Changes to the QTdrugs List and List of Drugs to Avoid in cLQTS
Members with cardiac conditions 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: December 12, 2023 Re: Changes to the QTdrugs List and List of Drugs to Avoid in cLQTS Dear CredibleMeds Registrants: AZCERT’s Scientific Review Committee has found
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 long distance in a way
Life with LQTS and LVNC by Abi Edwards
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,
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 phone still in her hand.
I never really thought much about having a heart condition until I had my son! by Jodie Pearson
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
