Danita LaShelle Jones, who lives in Madison, Alabama, is a caregiver to one of her four children, Ladybug, who lives with hereditary angioedema. She shares how learning the science behind her daughter’s condition has helped her feel more confident and prepared to support her daughter through each flare.
Transcript
When I was younger, I used to watch my father watch football, and I began to creep into the den sometimes and sit next to him and watch it. That went on for a little while. I loved watching the game of football, and I began to understand a little bit about how football works just from watching it often, especially during football season.
But finally, one day while I was watching a game, my father sat next to me and explained everything about football — what the refs were doing, what the calls meant, the plays that were happening on the field, what the coaches were probably saying on the sideline.
It was at that moment that football clicked for me because I understood the science behind what was going on on the field.
I liken that to why it is so necessary for caregivers and patients to understand the science behind hereditary angioedema. Sure, you can learn through trial and error about how to navigate the disease.
And sure, you may be able to know when certain things are coming or what certain signs or symptoms mean. But the moment that you truly sit down and learn the science behind HAE — its symptoms, the different things going on inside the body, why certain medicines may work better than others — the better understanding you will have about how to go forward when you meet certain challenges.
The best thing about learning the science is that we, as caregivers or even as patients, can begin to move forward in such a way that, with a better understanding, we are able to navigate those challenges as we meet them from day to day.
Even though we may have the same amount of challenges, it’s a little easier to navigate once we truly know what’s going on.
