myheart hard copy newsletter-2021

Members who subscribed to the myheart hard copy newsletter should have now received it. Read the online version here. Subscribe to myheart mailings here.

CRY International Medical Conference 2021

Due to the ongoing COVID-19 pandemic, the CRY Conference was moved online again for 2021. On October 14 and 15, the conference was hosted in partnership by CRY and the European Association of Preventive Cardiology (EAPC). We were thrilled to welcome leading experts in cardiology from around the globe for presentations, discussion of case-based scenarios, […]

Online myheart meeting with Dr Gherardo Finocchiaro-Thursday, 17th March, 2022

A myheart members’ video meeting was held on Thursday, 17th March, 2022.  Meetings are free to attend and give members an opportunity to meet and discuss their experiences in an informal but supportive environment. Those young people that attend these meetings usually find them very helpful.  It does not matter how long ago you were diagnosed […]

Brugada Syndrome Diaries

When thinking about fundraising for a charity, CRY was an obvious choice for me as they’ve done so much for my family and I when we were younger. When I was just six years old and my Brother hadn’t even turned two yet we lost our Dad, he was just 34 years old himself. This […]

The price of always being right! by Charlotte Monins

I’m always right! Friday 15th December was the one day I wish that hadn’t been true. That was day that after months, well years, I finally got a diagnosis. Brugada! A hereditary condition that puts me at risk of cardiac arrest (apologies if that’s not quite definition it’s all still very new). I’m first in […]

Brugada and me by Laurie Ketley

The 9th December 2016 isn’t a key date for me. On that day, I was with my Mum, Dad and younger Sister, who were finishing up from undergoing their Flecanide Challenges…which all fortunately came back clear, which was a huge relief. At 18:30 I received a phone call from my Cardiologist, who went on to […]

Joseph Tanner talks about having an ICD implanted

Watch myheart member, Joseph Tanner, talk about his experience of having an ICD implanted. Hi, my name is Joseph tanner. I was diagnosed with Brugada syndrome in 2008 and I was told that I was going to have an ICD implanted. And at first thought I was really scared. I didn’t know what was going […]

Joseph Tanner talks about doing the Brighton Marathon

myheart member, Joseph Tanner, talks about his experience of taking part in the Brighton Marathon, 2015 below. This story begins on Sunday 16 March 2008; I entered the Hastings Half Marathon. The week before the half marathon I had a cold, and at the time I didn’t think much of it. On race-day I felt […]