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.
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.
My “treatment plan” for HAE attacks—before I had an actual treatment plan in place? Tough it out!
Talking with my family members about HAE is not always an easy task. I come from a large family and most of my mom’s side of the family has HAE. The older members of the family have been dealing with attacks for close to half a century! Their motto is, “This has worked for 50 years, why change now?” Of course, “this” means enduring an HAE attack while it runs its course.
It has taken some time for my healthcare team and me to find an HAE treatment plan that works best for me, but we think we’re on the right track.