My husband, David, now 49 years old, suffered his first hereditary angioedema attack when he was very young. He told me that back then, it was very difficult to find information on the disease. Even finding a doctor with experience treating HAE was a challenge. Today, there are many resources out there and information that can help people better understand this disease.
Because of my husband’s HAE, I’ve become close to many people in the hereditary angioedema community—they’ve become my “HAE Family.” I know I can count on them to understand what I’m going through, because they’ve been there, too.
I didn’t find out about my husband, David’s, hereditary angioedema (HAE) until after we were married. While it was a comfort to finally understand why he was in bed many times with pain, the concept that my husband had a chronic disease took a lot of getting used to. I wondered how we would carry on, but since finding out about his HAE, I’ve learned a lot, adapted my life to being his caregiver, and tried not to allow his HAE to define our lives.
HAE is a rare condition, so finding the right HAE doctor can be difficult. But I want to share the questions that have helped me figure out what I want out of my doctor.
Leaving the doctor’s office with a diagnosis, I felt hopeful and optimistic. Yet, I still felt very much alone.