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.
Coming across CRY has been the best thing after such an overwhelming period! by Kaitlin Lawrence
My name is Kaitlin Lawrence – I was an elite netball athlete, playing in the Scotland international senior squad for the past 3 seasons, training with the Scottish Commonwealth Games squad and World Cup squad in 2022 and 2023. I was a squad player for Surrey Storm, an ex-professional team in the Netball Superleague (NSL […]
Everyone should have a choice to get screened! by Harry Trowbridge
In April 2019, at just 15 years old and in my GCSE year, my life took an unexpected turn. I started experiencing a series of unexplained symptoms that left both me and the doctors puzzled. The symptoms, which seemed random and unrelated, included skin lesions on my legs and feet, severe muscle pain in my lower limbs, and at times, an inability to walk.
Amazing things are possible! by Thomas Morris
Our world fell apart 3 years ago when three of us Morris gang (Thomas, Xander and Jude) were diagnosed with a genetic critical heart condition called LQTS.
Having never had major health issues before, to being told I was very lucky to be alive certainly changed my perspective on life.
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.
624 Reasons Why by Joe McEwan
My name is Joe, and I suppose you could say I’m your fairly average 23-year-old man. I graduated from university with a law degree in 2022, have played sport pretty much my whole life and I love travel, playing guitar and art. I also had a sudden cardiac arrest at the age of 22.
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 […]
How research can lead to review and potential reform for UK screening policy
Interview with Dr Harshil Dhutia (Consultant cardiologist, Glenfield Hospital Leicester & Clinical Lead for the Inherited Cardiac Conditions service, University Hospitals of Leicester):
CRY’s Research Fellows – both past and present – are playing an increasing role in helping to inform and influence decision makers, based on their highly acclaimed, published research papers and the findings they present at UK and international conferences.
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 […]
Empowering Hearts: Dr. Joyee Basu’s Groundbreaking Research Redefines Exercise Guidelines for Hypertrophic Cardiomyopathy Patients
The issue around the impact of exercise and physical activity on young people living with a heart condition is something that is much debated amongst both physicians themselves on the ‘conference circuit’ and often comes up at CRY’s myheart meetings, too. Indeed, CRY’s cardiology experts are commonly asked, ‘is it safe for me to exercise?’ or ‘should I even break into a sweat’.’