How being an HAE caregiver led me to awareness and advocacy

A story about how this columnist first learned of HAE day

Danita LaShelle Jones avatar

by Danita LaShelle Jones |

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“Too bad there isn’t a children’s day!” one of my children declared. We had just wrapped up a great Father’s Day breakfast, where we had inadvertently referred to the fantastic Mother’s Day breakfast I had received a month earlier.

“You do get a children’s day,” I quipped. “It’s called Christmas and your birthday.” I chuckled at my retort, as it was the same one my parents gave me when I was a kid.

“No, Mom, we need a day like how parents get a day!”

Somehow, I moved the conversation away from the subject, knowing there was, in fact, a National Children’s Day. And while my husband and I think our kids are fantastic, we had no intention of observing it. Still, because the conversation fizzled out, I wasn’t worried about any of them discovering the truth.

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“OK, Google!” that same child yelled at the device in our kitchen a few years later, “when is Children’s Day?”

I froze as the AI diligently answered their question: “Children’s Day is observed on the second Sunday in June.” The jig was up.

Our youngest child quickly informed their siblings, and the news spread like wildfire throughout the house. There was a Children’s Day, and our kids insisted that we observe it. Unfortunately for them, we were already on the fourth Sunday of that particular June. They’d missed it. Their morale immediately shifted.

I frowned as I listened to them plan the following year’s event. Birthdays are a big deal in our house, and Christmas is a child-centered holiday. So the fact that our kids were obsessed about being acknowledged on a random day they didn’t even know about a year before baffled me.

What was so important about this particular date that couldn’t be acknowledged every other day?

My answer would come under different circumstances sooner rather than later.

When our daughter, whom we lovingly call Ladybug, was diagnosed with hereditary angioedema (HAE), I was thrust into some on-the-job training as her caregiver.

I learned the difference between emergency infusions and maintenance medications, how to administer an IV due to excellent at-home training, and even how to detect oncoming flares. Yet one of the most important lessons came when we learned about the Hereditary Angioedema Association (HAEA).

When I finally admitted that our family needed emotional support and we joined the HAEA, I discovered that May is Angioedema Awareness Month, and May 16 is HAE Awareness Day.

But discovering this well past May was disheartening. Yes, we dealt with HAE daily, but knowing that a month and day was set aside to acknowledge all we were going through seemed special.

Suddenly, acknowledging Children’s Day seemed less silly.

This past week, I celebrated my second annual HAE Day livestream to teach more people about the day and the illness. As long as I can, I’ll never miss that day again.

Happy Angioedema Awareness Month!

Although some may have missed May 16 this year, there are plenty more to come. And much like my children and their special day, now that others are aware, we can make plans to come back and celebrate together.

Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to angioedema.


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