Living with Brugada

I did not realise that anything was wrong with me. Occasionally I would notice that my heart seemed to be going fast like it does when you’ve just been running, but I would not have been running.

I didn’t think anything of it as it didn’t bother me and at 15 why would I think there was anything wrong? For some weeks I’d been having headaches. I had not been sleeping well and I put it down to that, but on 11 October 2001 I collapsed.

I was taken by ambulance to the local A&E. They examined me, did the usual tests and said they could find nothing wrong. I still didn’t feel right, but I didn’t know why. Mum (who had been a nurse) took me back to the hospital. Again they sent me home. Mum took me back again and made them keep me in for tests.

I was put on an ECG machine and over the weekend an unusual trace was noticed. I got taken to the Brompton where they ran more tests and found that I had a sudden death syndrome (SDS) called Brugada.

It was a major shock to everyone. I didn’t know what to say or how to handle it. I was a fit healthy lad that had just fainted as far as I was concerned. To be told that I hadn’t fainted but on the night I collapsed my heart had actually stopped beating and that when I fell and my chest hit the floor it had started my heart again – well how do you take that in?

My doctor told me that the only way of making sure that it didn’t happen again was to have an automatic implantable cardioverter defibrillators (AICD) put into my heart. I was not too impressed but I had no choice.

Now that I have it I feel reassured that it can’t happen again. I know that the defib has fired. I was catapulted off my bike when it did. I felt a right fool, but it was good to know that it was doing what it’s there to do.

The only thing that it’s stopped me from doing is joining the armed forces. I still do everything else. I played rugby until I left school in 2002 (wearing a padded jacket in case I got hit on the AICD); I ride my bike – all the things I did before and it’s just good to be alive.

We got really cross that the hospital didn’t know about the syndrome and when we heard from Pedro BRUGADA and found out that most SDS can be detected on an ECG it made Mum so mad. We decided that we’d have to do something about it. That’s when we found CRY.

SDS is not as uncommon as people may think. You don’t have to be ill to have it and a lot of them are inherited. By a simple test, which takes less than ten minutes, you can be told if you have one or not. That’s why I want to support CRY. I don’t want another family to go through what my family went through, especially when I know that there’s no need for them to. I was a very lucky lad, but there are kids out there who aren’t going to be as lucky as me unless we get them tested.