JACK’S STORY Life with Hereditary Angioedema (HAE) “I think more than 20 or 30 times I’ve been to hospital because of my HAE. I was diagnosed with HAE when I was four years old. That’s when I had my first attack. I don’t really have any full memories of the first time that it happened other than I remember being upset because I couldn’t play on my DS because I couldn’t move my fingers! But I don’t even remember going to see all the doctors or anything – I just remember the first attack and that’s it. It was in my hand and foot at the same time and I really had no idea what was going on so it was sort of scary. It took 13 different doctors to figure out what I had. Most of my attacks were in my extremities – my hands, my feet and my face. It’s hard to move your fingers and it sort of just feels like pins and needles all the time, and in the feet it’s hard to walk on them. And as far as the facial ones, sometimes it’s hard to speak depending on where they are. When I started going through puberty the attacks became more frequent and worse. I missed 40 or 50 days of school in 7th grade. So my first throat attack, throat swell, was in the summer going into 8th grade and I was downstairs playing my Xbox and I got this weird feeling in my throat. It started to worsen within 5 minutes, and I remember I went upstairs and told my mom and she was really calm about it but I was scared because I’d never had one. “I think more than 20 or 30 times I’ve been to hospital because of my HAE.” The drive to the hospital was probably less than 15 minutes but it was the longest 15 minutes of my life. I was scared of dying. I didn’t want to die from something so instant and little that I really had no control over. Emotionally it took a toll on me. And I was never the same for a year and a half, maybe two years after, all the time being paranoid something bad might happen to me. I was having to go to therapy to get over it, because I couldn’t be somewhere where there wasn’t someone who could do my medicine. The only person I really trusted to do it was my mom so basically the whole summer I stayed at work with my mom so I was missing out on a lot. I felt isolated not only from my friends but everyone else. It was hard for me to go back to just being a normal kid.“ 8 Limited Our Impact 2025 About CSL From our CEO Healthier Communities Science and Medicine Legacy Lifesaving Medicines
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