For some young people with heart conditions, the path to diagnosis can be a difficult one. Discover how teenagers Kate (left), and Shannon (right), found out about their rare heart condition and found a best friend – with a little help from us.
Kate: “I was 11 when everything started happening. Towards the end of primary school I started to collapse a lot. I was late for school and so I was running and I just collapsed. We thought it was stress. I was very tired after I collapsed. I could barely stay awake.”
Shannon: “I spent my early teenage years fainting and wondering why. When I was 11, they thought I had epilepsy. It wasn’t until I was 14 that they diagnosed me with a heart condition.”
Kate: “We both have a condition called Catecholaminergic Polymorphic Ventricular Tachycardia, which is a bit difficult to pronounce so it’s called CPVT for short. It’s really rare – my consultant only sees 30 patients who have it. It’s quite scary at times – I had to take a lot of different drugs before we found something that worked for me.”
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Shannon: “It’s hard to believe there are 500 other teenagers out there like us in the UK – Kate was the first person I’ve met with the same condition as me. Turns out we even go to the same hospital and have the same doctor. Now we get to gossip about our treatments and what the nurses get up to!”
Kate: “My specialist nurse introduced me to the British Heart Foundation really early on. I was only 11 when I went to my first workshop, called Speak Up, and it really helped my confidence. I’ve now been to three Speak Up workshops and two Think Tanks with [email protected] It’s been great. And best of all, I got to meet Shannon!”
Shannon: “The day Kate and I met we didn’t stop talking. We’d only ever read about other people with the same condition and then suddenly we were face to face and able understand each other better than anyone else.”
Kate: “We couldn’t believe we’d met each other. And we have much more in common than just our heart condition. We talk about boys, shopping, college and anything else that matters.”
Shannon: “[email protected] has been brilliant for me. I went to their Weekend Stunner event last year - It was such a good time. I was just sad that Kate couldn’t make it - she was too sick to come. But it was just a great place to chat to everyone and get to know each other.”
Kate: “At first I didn’t want to talk about my condition. I didn’t want to tell anyone about it. But the British Heart Foundation has helped me understand it and meeting other people with the same condition has really helped.”
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