Hayley Brown

Living with long QT syndrome

I was 19 years old and had just failed my second driving test when my first and only attack happened. I ran through the garden and into the house where my mum was waiting nervously. I told her that I had failed and then went on to tell her I didn’t feel very well, but I collapsed and lost consciousness so never got to finish my sentence. 

I remember waking up in the kitchen and hearing my mum on the phone to someone. I had lost control of my bodily functions and because I had fallen on my left side, my arm was tingling.

The next thing I remember is my dad arriving and I could hear him shouting my name as he ran down the garden path. I was rushed to hospital and had several tests done but I was allowed home that night.

Initially the doctors thought I was epileptic and I spent months seeing neurologists. Its fair to say that this was an extremely frightening time for me and my family. However, the results of numerous scans was that my brain was fine – but my ECG from when I was originally taken in didn’t look right.

I was then referred to John Radcliffe hospital and was admitted for the day for several tests, including ECGs, adrenaline tests, scans and the dreaded treadmill test! They diagnosed me with long QT that day and I’d like to think that I took the news relatively well. I was told that my condition is hereditary and that I had had it since birth. I was put on beta-blockers and cautioned to not over exert my body. I have since had genetic counselling to see where the condition came from, but it came back as inconclusive.

Since then I have had no further attacks. I maintain a healthy lifestyle and I am a keen kick boxer. I climbed Snowden for charity last year and I was determined that long QT wouldn’t stop me reaching the top of that mountain!

I was terrified when I was diagnosed that life would never be the same again and I hope my story will help anyone out there who feels that way at the moment. Overcoming this diagnosis has been one of the hardest but most rewarding things I have ever done and I am living proof that this doesn’t have to rule your life. You take your tablets, take life one step at a time and make the best of the hand you’ve been dealt and it’s not as bad as you think.