Before I was diagnosed with HAE, I had recurring attacks of abdominal pain and nausea. I tried to “toughen up” and not talk about them—everybody has stomachaches, right? I was embarrassed, and I didn’t want people to think less of me.
As an adult, after I was diagnosed with HAE, I started working at my current job. In my early days there, I told my management team about my HAE diagnosis, but I didn’t make a big deal of it. It was mostly in passing. I missed work here and there and never really said too much about why or what I was experiencing. Those coworkers who were really good friends of mine knew more, but not a lot more.
A few years ago, before I was prescribed FIRAZYR® (icatibant injection), a medicine used to treat acute attacks of HAE in adults 18 years of age and older, my face started swelling at work one morning. Since then, I’ve learned that any swelling of the face or neck area could move to my throat—and laryngeal attacks can be life threatening. Now, if any part of my face or neck starts to swell, I go to the nearest emergency room immediately after injecting FIRAZYR. But back then, I decided I would keep working, if I could, and really let my coworkers see for themselves the impact of this disease. I was fortunate that the attack did not spread to my throat. I was also fortunate to find out that my coworkers supported me and didn’t think less of me because of my disease. I learned I could trust them and, in fact, I call them my “work family” now because we've grown so close.
After that, I started finding out more about HAE, so I could educate others. I realized I didn’t want my loved ones to feel like they couldn’t be open about my HAE, or feel ashamed or embarrassed by it. I knew that I didn’t want to stay quiet any longer. I wanted to answer the question “What is HAE?” for all the people in my life. And I knew that I, personally, would do whatever I could to help spread awareness and education. I want everyone to know that they can be proactive about managing life with HAE by working with their doctors to find a treatment plan that works for them.
How do you educate others about HAE? Please leave a comment!
If you have HAE, you may want to talk with your doctor about treatment options. If you want to talk about FIRAZYR with your doctor, click here to sign up for more information, including a page that you can download and take with you to your next doctor’s appointment. If you and your doctor decide that FIRAZYR might be the right treatment option for you, he or she can request a single dose of FIRAZYR as a sample for you to try.