When I wrote this, I was thinking about my family’s plans for this summer. We started the summer out with a bang for Father’s Day: boating on Saturday and attending a cookout on Sunday. I spent the week preparing things so that we would be ready to go, but it seems I ALWAYS have to have two plans in place. “Plan A” is for when the “entire” family—me, my two children and my husband, David—attends, and “Plan B” is for when it’s just me and the two kids attending the function. I do this because I am well aware that my husband’s HAE has a knack for rearing its figurative “ugly head” at the most inopportune times.
HAE and Family
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.
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.
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.
As some of you may already know, I have been “living with HAE” for about 15 years. I don’t have HAE, but several of my loved ones do, including my husband. The journey of living with HAE as a caregiver can be exhausting, frustrating, and heartbreaking. But with the support I’ve received from my family—in all the forms that family takes—the weight of care giving is no longer quite so heavy on my shoulders.