Because my job revolves around documentation, keeping track of my hereditary angioedema (HAE) attacks should be easy for me. But that’s not necessarily the case—mostly because the thought of writing down the experience doesn’t sound appealing to me. I suppose it’s because I just want to have the attack and be done with it. The last thing I want to do is relive it by writing down the experience. But since the next attack won’t necessarily be the same as the last, I’ve got to be my own best advocate and keep track of my HAE attacks.
Life can be filled with stress at times. Each of us may experience it at different levels. Having hereditary angioedema makes me more aware of how stress can affect my body; that’s why I try to pay attention every day to possible stress and deal with it.
A patient-to-patient program is an event sponsored by Shire for patients and caregivers to learn about hereditary angioedema (HAE) and hear about a treatment option. It’s a rare opportunity to spend an evening with a room full of people who have experience with the same rare disease.
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.
I’ve met so many people in the HAE community over the years and it is hard for me to put into words how much what I refer to as my “hereditary angioedema (HAE) Family” means to me. Being able to spend time with other people who understand HAE means the world to me. Though members of my “HAE family” live in all parts of the country, we seem to share an immediate, deep connection whenever and however we get together.