Looking back, my first painful memory of what I think was hereditary angioedema happened at the age of six. I had gone out to the playground for recess when my belly suddenly began hurting so badly I could hardly breathe.
Growing up, I spent most of the summer months with my grandmother at her farm and she told me that my belly pain was just like hers. I had what she called “the belly.” As I grew older, I did the best I could to survive “the belly.” It would flare up and, inevitably, it would be during a vacation, holiday, or birthday celebration. Any time there was excitement, no matter happiness or sadness, I would have a problem.
My search for a diagnosis kicked into high gear in my 40s. Thankfully, my hometown doctor never stopped trying to alleviate my abdominal pain and nausea. Best of all, he allowed me to talk with him for an hour each time I went in with my swollen belly. This would be the man who sent me to a specialist who diagnosed me with HAE, at the age of 50. I will always be grateful for his kind patience, and I encourage everyone to keep searching for a doctor who really listens.
After I was diagnosed, I started looking for others in the family who may have symptoms. I have identified several who have HAE symptoms and encouraged them to seek a diagnosis. I believe in educating others, in spreading the word about HAE so that it becomes more commonly known.
Sadly, I lost my grandmother, who’d been in my corner, before I found a diagnosis. But, I’ve gained a whole community of people who understand “the belly.” These days, those of us with HAE have options, information, and support that were unknown in my grandmother’s day. We have certainly come a long way and I hope we all remember to be proactive about our health.