What an eventful summer! My family and I attended many cookouts and parties with family and friends, and we were fortunate to meet a lot of new people. However, there is one thing I dread about meeting new people: explaining hereditary angioedema.
I believe that hereditary angioedema can present obstacles to all who face it. Yet, as a woman, I think we are confronted with difficulties that may be uniquely inspired by our gender.
It was a warm summer evening, and Justin and I had just returned from a dreamy dinner date. We had been dating for several months, and I felt completely at ease with him. Justin’s cats greeted us at the door of his cozy apartment, and I quickly made myself at home. Sweet and understanding, he was incredibly supportive when I told him about my HAE—but he had yet to see it in action.
Helping care for my husband who is living with HAE, sometimes I feel like I know all there is to know about HAE. Sometimes I even questioned why I should bother, for example, attending different educational events when I thought I couldn’t possibly get anything more out of them. I am so glad that I’ve never allowed those thoughts to linger for more than a few seconds. It continues to amaze me how much information is out there to be had—and how much sharing that information can be beneficial!
I didn’t give too much thought to rare diseases until I was diagnosed with one—HAE. That’s when I realized how small the rare disease communities are and started reaching out to others and learning more. Now, I’ve got many of my questions answered and I want to share some of that information.