Before my hereditary angioedema (HAE) diagnosis, I didn’t know what was happening to me when I’d experience pain from what I now know was an HAE abdominal attack. I always found it difficult to explain to my family how my stomach aches seemed different from everyone else’s stomach aches. When I was getting married and expanding my family, I wondered, “How the heck am I going to explain this crazy thing?” Well, I just did the best I could. Sometimes, though, HAE attacks can happen that I just don’t want to talk about.
Some of you may be familiar with the Hereditary Angioedema Association, or HAEA , and some not so much. The HAEA is a non-profit patient advocacy organization that, in their own words, “focuses on increasing HAE awareness and education, diagnosis, empowering patient access to therapy and fostering groundbreaking research that includes finding a cure”. [Please note: Shire is not responsible for the content provided by third parties on any websites or information distributed by HAE support groups or organizations.]
A patient-to-patient program is an event sponsored by Shire for patients and caregivers to learn about hereditary angioedema (HAE) and hear about a treatment option. It’s a rare opportunity to spend an evening with a room full of people who have experience with the same rare disease.
Hereditary angioedema is a serious disease. So I don’t want anyone to think I’m making light of my HAE—or anyone else’s. But at the same time, I can’t spend my life being grim and serious about HAE 24/7. Keeping a positive attitude helps me to cope and maintain perspective about HAE’s impact on my life.
“Come to the party anyway!” I can’t tell you how often I’ve heard this! It happens almost every time I have to cancel plans because of an acute hereditary angioedema (HAE) attack. Family and friends who don’t have HAE sometimes don’t understand how serious and disfiguring HAE attacks can be—even when they really want to understand. But I’m always happy to answer any questions they may have.