My parents and I didn’t understand what was happening when my hands and wrists swelled the first time. Other than the swelling, I felt OK, so we didn’t make much of it. Back then, we had three guesses about the cause of the swelling:
- An allergic reaction
- I’d hurt myself somehow, without noticing it
- The sleeves on the sweatshirt I’d slept in were too tight on my wrists
But honestly, I was more worried about going to watch my school’s basketball game. I didn’t want all my friends to see the swelling, and I REALLY wanted to go to that game! Luckily, the swelling seemed to go away by the end of the day. The whole occurrence just seemed strange.
When I had another swelling episode not long after the first one, my maternal grandmother mentioned that she’d had strange swelling episodes throughout her life, as well. We figured, if she managed through them I would, too.
At that time, we didn’t know the stomachaches I’d had frequently since early childhood were caused by swelling, too. We never put them together, because I typically didn’t have any visible swelling at the same time as the stomachaches. Because HAE attacks are unpredictable and may occur at different locations, it wasn’t until I was diagnosed and learned more about HAE that I began to recognize and understand these and other symptoms. One way I’ve been able to learn more about HAE is by attending programs like Shire’s Patient or Caregiver Ambassador Programs and Ambassador Health Programs.
More than anything, I want to help other people know that HAE isn’t some strange, “all-in-your-head” problem—it’s a real health issue that people can talk to their doctors about. Talking openly with a doctor can sometimes seem scary, but for me, not knowing what’s happening is even scarier!
What were your first HAE symptoms? 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® (icatibant injection) 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. FIRAZYR is a medicine used to treat acute attacks of HAE in adults 18 years of age and older.