When I look back to when I first learned of my husband’s hereditary angioedema (HAE), it feels like a lifetime ago. I spent a lot of time trying to educate myself about HAE. I was certain that together we could deal with HAE, but I learned quickly that was easier said than done.
Many things are thought to be possible triggers of hereditary angioedema (HAE) attacks, such as anxiety, stress, hormones, and physical traumas. Some patients can’t identify any triggers for their attacks. Every patient’s experience is different. For me, trauma can be a trigger, but it’s usually not until the “trauma storm” has passed and things start to calm down that I get an attack. I don’t always know when an attack will happen, but by knowing my body, my HAE, and its triggers, I can better plan ahead for the unexpected.
Often, when I talk with newly diagnosed hereditary angioedema (HAE) patients, they have many questions. Sometimes they’re looking for validation, answers about their disease and attacks, or just another person to talk to on a similar journey. Having had HAE for a while now, I hope my advice and experiences can provide people with a sense of support.
When I was first diagnosed over 20 years ago with hereditary angioedema (HAE), only my close family and friends were aware. I didn’t know much about HAE at the time and I certainly wasn’t aware of what different HAE attacks were capable of doing to my body. Therefore, I didn’t say much about my HAE to other people.
Educating others is as much a part of me as hereditary angioedema (HAE) or my eye color. Whether as a nurse, a mother, or a person with HAE, educating others has always brought me joy and a deeper understanding of myself.