As I look back on my journey with hereditary angioedema (HAE), I feel that one of the challenges I, and others with hereditary angioedema, have faced is being understood. Our friends, family, and loved ones care deeply for those of us with HAE, but it can be hard for them to grasp what we are experiencing.
HAE and Family
I have always tried very hard to remain positive and have a sense of humor in dealing with and talking about my hereditary angioedema and HAE attacks—especially in front of my daughters. [FIRAZYR® (icatibant injection) is a medicine used to treat acute attacks of hereditary angioedema (HAE) in adults 18 years of age and older.]
Being a caregiver for family members with HAE is definitely an emotional rollercoaster. I experience emotional highs and lows depending on the frequency of my loved ones' acute HAE attacks. To me, those attacks—coupled with the challenges present in everyday life—can make some days feel as unwelcome as a sudden punch in the face. So I don’t allow myself to feel guilty for those times I need to care of myself. After each punch, I remind myself that I’ve earned some time for myself.
My husband was diagnosed with HAE at a young age. When he’d have an attack, he had the benefit of knowing what was wrong with him. One of his problems, though, was that he didn’t know what the specific triggers for the attacks were. In the first several years after I found out about my husband’s HAE, it felt like I had a better chance of winning the lottery than helping him figure out what his triggers might be. We started keeping a diary of his attacks, and we’ve picked up on some potential patterns that we’ve shared with his doctor.
I am a lot of things—a daughter, a sister, a wife, a mother of two, and a full-time employee with a very busy work schedule. But perhaps most importantly, I am a “caregiver.” Some may call themselves caregivers or caretakers, but for me, it’s all about caring for my husband who is living with HAE. I make it very clear to others in my life that I will drop what I am doing at a moment’s notice to be by my loved one’s side at his time of need, and I wouldn’t have it any other way.