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 […]

It’s Scarier Not to Die by Jamie Poole

For the first time in 12 years, I experienced my first incident of an inappropriate shock. Not just one, but five, one after the other. Bang. Bang. Bang. Bang. Bang. To say it was painful would be a gross understatement. It was a combination of the most painful experience of my life, mixed with the […]

My story so far – Left Ventricular Non-Compaction Cardiomyopathy

Hello. My name is Phoebe and I’m 22 years old. When I was three years old, I was admitted to Great Ormond Street Hospital to have open heart surgery to repair an Atrial Septal Defect (ASD), other wise known as a hole in my heart. Since then I was very healthy and finished school and […]

Comparing 2008 to now

Being in lockdown, being in isolation it’s made me re-experience a life I had before and compare the feelings I have now, to that I had back then. We all live life a little blindly, we all learn from an early age about death, but for many years we’re shielded from it by our parents, […]

Brugada and Self-Isolation

Monday 16th March I celebrated my 12th re-birthday, re-birthday is a term that all cardiac arrest survivors use to celebrate surviving a cardiac arrest. I didn’t really celebrate it this year, maybe ‘cause of this underlying cloud that was shadowing the world. This cloud, this virus COVID-19/ Coronavirus, we first heard about this virus whilst […]

myheart Newsletter 2018

A digital copy of the myheart Newsletter 2018 is now available to read here on Issuu. Catch up on the latest news and updates, research news, myheart meetings and read #myheartmystory’s from members.

My journey with ALCAPA – My Story by Serena Freeman

My journey with congenital heart disease began on 19th March 2018 when I was 18 years old. I was at work and had just gone on my lunch break when I had a sudden cardiac arrest. The people around me called for an ambulance and one of the men was then guided through CPR and […]

Idiopathic Polymorphic Ventricular Tachycardia – My Story by Hollie Bell

Since having my little boy 3 years ago this month I haven’t really felt well and have been suffering palpitations, dizzy spells and feeling breathless. My GP just kept putting it down to post natal depression and anxiety. I would only get the funny palpitations about 10 days before my period was due, and then […]

The CRY Great Cake Bake 2018

Be part of the CRY Great Cake Bake during CRY’s raising awareness week in 2018 (17th – 25th November). Register online and receive your free CRY Great Cake Bake Booklet and Bake Sale pack. As we look to build of the success of last year’s event, we are hoping that 2018 will push us towards […]

Ablation and the Road to recovery

#TEDICATED – CHAPTER 3 – CARDIAC ABLATION AND THE ROAD TO RECOVERY It has been some 8 months since my diagnosis of Wolff-Parkinson-White Syndrome. (see previous post) A lot has happened in this time, which have put a temporary hold on a few activities. This post is about my Catheter Ablation treatment, how it went […]