For the longest time, no one in my family realized that the swellings and stomachaches I had were symptoms of an HAE attack. It wasn’t until my symptoms started happening more frequently that my grandma told us she’d experienced similar symptoms throughout her whole life. She said she had painful stomachaches, as well.
After I was diagnosed, we thought some more about the “hereditary” in hereditary angioedema, and my mom decided to get tested. She was diagnosed with HAE, too, but, unlike my grandmother and me, Mom hasn’t experienced any noticeable attacks in the past or now that we are aware of.
Some of my family members have experienced HAE attacks in a variety of different locations in the body—abdomen, feet and hands, face—but some have attacks in the same one or two places almost all the time. For example, the majority of HAE attacks for one member of my family are abdominal. Another family member experiences abdominal HAE attacks similar to her sister’s, and she also has swelling in her hands and feet, like I do.
It also seems strange how the start of HAE attack symptoms may be different from one attack to another. In my experience, one time the swelling is so slow that, at first, I hardly notice my hand swelling, while at other times, in just three or four hours, my hand may double in size. I guess one thing that doesn’t vary is that HAE attacks are so unpredictable. You just never know for sure what’s going to happen when.
That’s one reason I find educational programs like Shire’s Patient and Caregiver Ambassador Programs and the You, Me and HAE Mentor Program helpful. When I hear a patient’s story about living with HAE and learn about their path to diagnosis and how they manage life with HAE, I learn more about ways HAE experiences can be different for people. That helps me recognize what may be happening with all my family members who are diagnosed with HAE, not just myself. And it helps me understand more about this complicated disease.
I like to stay “in the know” about all things HAE-related because, when I know more about HAE and its symptoms, I am more prepared and able to cope with the one side of the HAE coin that never changes: the uncertainty and unpredictability that goes along with it.
I would love to know if your family experiences different HAE symptoms! Please leave a comment!