I first became aware of CRY in 2008, shortly after the sudden death of one of our cousin’s, Ralph. He was 28, fit, healthy and like all of us, unaware that Brugada Syndrome existed; let alone within our family. After Ralph passed away, testing showed several members of the family had Brugada Syndrome, and initially this was the case for me as well. In June 2010, in London under Professor Sharma and his team gave the unexpected result that I was positive for Brugada Syndrome – unexpected because 18 months previously I’d received the all clear at a local hospital (rare to have a false-negative but happens)
Six months later I got a prophylactic subcutaneous-ICD fitted in January 2011, followed by a pacemaker in October 2013 for Bradycardia…following this and subsequent unusual complications, I got back in touch with CRY and learnt more about myHeart.
I eventually plucked up the courage to attend, and would now encourage anyone who would like to meet other young adults in similar situations (whether diagnosed or undiagnosed heart problems), to come along.
Everyone I have met are friendly, funny, positive (despite what they have experienced), and supportive. It is also very positive to have Dr Michael Papadakis there in the afternoon, to answer any questions/give advice.
There is limited support/contact available for young adults with heart conditions; myHeart is bridging that gap, and everyone you meet will make you appreciate that whilst it can be incredibly tough, it is also possible to still be active and do things you love.