[Note that FIRAZYR® (icatibant injection) is only indicated for adults 18 years of age and older with HAE. It is not known if FIRAZYR is safe or effective for children under 18 years of age.]
HAE has been a part of my life for a very long time. At first, I didn’t know what was happening to me when I had a stomach or hand attack, but I was finally diagnosed with HAE when I was 20. Back then, it was hard to explain to my family that my stomachaches didn’t seem to be like everyone else’s stomachaches. I wasn’t just being a wimp. I remember how scary it was to me, but, over time, my family became used to my attacks. Then, when I had a family of my own, I wondered, “How the heck am I going to explain this crazy thing?” Well, I just did the best I could.
I remember one of the first times I had a facial attack around my daughter. The attack started when I was at work, so I called my husband and asked him to prepare her for when I got home, as my face was badly disfigured. Having never witnessed one of my attacks before, she started crying when she first saw me. I could see the fear in her eyes, and it broke my heart. So I just kept talking to her and telling her that my face would get better. When she calmed down, she touched my face and said she loved me. It was an emotional experience for all of us, but it just deepened our love for each other.
Watching me live with this disease and work with my doctor to come up with a treatment plan to deal with my attacks has helped address my family’s concerns. They now know what HAE looks like and that, after an attack, their mom will go back to looking the way she did before. Of course, we’re all aware of the possibility of a laryngeal attack, which is certainly a scary thought. But I know that if I do have a laryngeal attack, then I should immediately go to the nearest hospital emergency room after injecting with FIRAZYR. And I try not to let that possibility affect my attitude. I’ve never said, “Why me?” or “Poor me.” I have always maintained a positive attitude, and I truly believe that my attitude has helped keep my family positive, too.
Growing up with HAE, I didn’t have anyone who really knew what I was going through and could explain things to me. That’s why I enjoy participating in Shire Ambassador events, to hear from other people who are also living with HAE. And that’s one reason why I’ve always made sure to talk about HAE with my family. It’s important to me that my family not be afraid of something because they don’t understand it. Because of that, I’ve always encouraged them to ask me any questions that pop into their heads. And I’m proud that they feel comfortable enough to talk with me about HAE. So, even though HAE will always be a challenging part of my life, in some ways it’s helped me grow closer to the people I care the most about.