Hello, everyone. When I was diagnosed with HAE, I really didn’t know what it was or how it would affect me. Heck, I was only 19. But, since then, I’ve learned so much about the importance of working with my healthcare team and having support from others. And I’ve learned just how strong I am. People living with HAE should remember that we are our own best advocates. No one can express your needs better than you can.
I haven’t always put my needs first. I’m getting better, but it’s definitely a process. On top of working full-time, I’m forever juggling being a wife, mom, sister, daughter, and friend. I always joke that I have two full-time jobs, but only one of them is away from home. With so many hats, it’s easy to get pulled in lots of different directions and forget about my own well-being.
As far back as I can recall, I’ve had stomachaches. But when I turned 19, my swelling incidents got worse. I went to see my doctor and he referred me to a rheumatologist. The rheumatologist said that, although many of my symptoms were similar to those of rheumatoid arthritis, he was certain I didn’t have that. He then sent me to an allergist/immunologist, who ran blood tests and later diagnosed me with hereditary angioedema. I was thankful to finally have a name for what I was experiencing, but a disease with no treatment? That scared me!
Unfortunately, back then, there wasn’t much the doctor could tell me to ease my anxiety. He handed me some pages copied from a medical book, said there wasn’t much that could be done in terms of treatment, and told me to go to the emergency room immediately if my throat ever swelled. My God! I prayed that would never happen. I figured I’d just have to be tough and hope for no throat swells. I lived by the motto, “Enjoy the good days, and keep the faith during the bad days.”
After the birth of our first daughter, I finally got tired of feeling helpless and alone—like no one really understood what I was going through. I found a patient advocacy group for people living with HAE. I also learned that the doctor who’d diagnosed me was specializing in HAE. I started seeing him again, and I encourage all of you to find a good healthcare team.
I became passionate about learning more and raising awareness of this disease. I’ve met other people living with HAE, and I’ve learned to lean on my healthcare team and loved ones. Having support during my own journey has made a world of difference in helping me learn to be more active in my healthcare.
And I always remember to “enjoy the good days, and keep the faith during the bad days,” too.