Over time, I've found it interesting how HAE symptoms may vary so much within a family — and may change in an individual over time.
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!
Dear Younger Self, I look at you and my heart swells with pride at the sheer courage and resolve you show in facing the mysterious symptoms of your HAE attacks. Yet at the same time, my heart breaks because I know you have years of uncertainty still ahead.
During an HAE attack, I used to catch myself downplaying the symptoms to myself, thinking that I’d wait for a “big one” before treating. But now I know I don’t have to wonder about “ifs” and “whens” when it comes to treatment and I don’t have to simply tough it out and hope for the best—there is something I can do for my HAE.
As someone with a rare disease, I realized open communication about my HAE has been important for my family. I know, for me and my wife, just sitting down and being honest, open, and empathetic has helped us become better at managing life with my HAE.