SADS UK Member Living with LQT

Lisa said: “Our SADS journey began when I suffered a sudden cardiac arrest just over 10 years ago. It was during my time in hospital that I received the diagnosis of Long QT Syndrome. Everything all feels a bit blurry from my time in hospital, but I remember just feeling incredibly lucky I’d survived. I was the first family member to have done so as due to our diagnosis we discovered that my grandad had never suffered a heart attack, he died laughing at the Goodies due to our heart condition. Emotion is one of the triggers of LQT Type 2. My cousin also died at the age of 13 and we believe that my great grandad also died of LQT. 

Following my diagnosis, I underwent genetic testing and thankfully they were able to pinpoint the gene and my family underwent testing. My dad, brother, sister and two daughters were diagnosed with Long QT also. Since then, my two nieces and nephew have also been diagnosed. Although it was a shock to be diagnosed at first, I was also relieved that I had survived and could now protect my family as much as possible. That’s not to say it’s not been difficult, for me the biggest challenge is restricting my two daughters in certain activities to keep them safe. I also think it’s safe to say there isn’t a day that goes by where I don’t worry about them. My heart is always in my mouth when the school ring. They’ve often felt frustrated at times in not being able to participate fully in sports day or follow in my footsteps and take up swimming as prior to my diagnosis I swam competitively. It’s safe to say in 10 years we’ve come a long way in accepting our condition and have learnt to live with it in a way that still allows us all to live life fully, the girls both have found sports they can do and have accepted their heart condition. 

SADS UK have been such a support to my family since we were diagnosed, from helping to purchase our defibrillator to arranging defib training and putting me in touch with someone who was further down the line in their diagnosis to help support me and answer all those questions I had. If I hadn’t have had SADS UK in the beginning I’m not sure how I’d have coped. I simply can’t thank you all enough. 

My advice to anyone newly diagnosed with LQT is whilst it may seem scary and daunting right now, there is light at the end of the tunnel. Knowledge is power where our heart condition is concerned, as you can protect yourself or your loved ones as much as possible. Reach out for support, whether that be through SADS UK or there’s a great Facebook group for Long QT full of people like myself ready to help.”