I was diagnosed with HAE about three years ago, but the first year was still rough because I didn't have a proper action plan. I'd have an attack, panic, go to A&E, wait hours, and sometimes the staff hadn't even heard of HAE. One time they tried to give me adrenaline for what they thought was anaphylaxis. Everything changed when I got connected with a specialist centre. They gave me on-demand treatment to keep at home, taught me to recognise the early tingling that means an attack is starting, and wrote a letter I carry in my wallet explaining my condition to any healthcare professional. The attacks haven't stopped, but my relationship with them has completely changed. I go from the first sign to treatment in minutes instead of hours. I've even managed a mild throat attack at home, which a year ago would have sent me straight to hospital in a panic. For anyone newly diagnosed: the right specialist support makes an enormous difference. Don't settle for being managed by someone who sees HAE once a year.