Unlike many patients who struggle for years without a diagnosis, I knew I had HAE at an early age even though my symptoms didn’t present themselves until later in life. Three generations of my family had suffered from attacks. We became known as “the family with that strange swelling disease.”
After watching my family struggle with HAE, I finally suffered my first recognizable attack when I was 20, during my first pregnancy.
As painful as my HAE attacks were, the psychological impact of the disease is what really ruled my life. I never committed to a career because I didn’t have the confidence that I’d be able to keep up. And it made me sad when my health concerns kept me from doing things with my family, such as play volleyball, because they might trigger an attack.
Having HAE attacks after doing normal things, like stapling test packets while working at a school one day, was embarrassing enough. But it was worse when, so often, I was made to feel that my ailments were imaginary by those who didn’t understand HAE. Even after I was diagnosed, one doctor still suggested that I might have a “depressive illness.”
When I was raising my children, we were still fairly isolated from anyone else who had HAE. But in the late 1990s, I began connecting with other patients online. Some of us traveled to a conference where we talked about what we could do to help others with this disease. It’s an awesome feeling to walk into a room full of people living with HAE, when for years it felt like mine was the only family in the world with this disease.
I know I may never get my own statue erected, but today, I feel I can still leave my mark on the world. I know I’ve set the right example for my family, and I’m happy I’m able to encourage others to have an impact on the HAE community. I hope that each person with HAE will continue to become more educated and work with their doctor.