How finding our community can be a time-travel hack

This one starts a little differently.

Usually I begin my columns with a fun anecdote that connects to a story about our oldest daughter, whom we lovingly call Ladybug, and how it relates to the lesson I learned regarding her hereditary angioedema (HAE) diagnosis. At the end, I sum up everything with a thought or poignant quote.

But this time, I think it’s appropriate to start at the end. I may have had a different outlook if I’d known the ending.

As caregivers of children with rare diseases, finding available information, linking ourselves to the largest community, and connecting with people who know and understand who we are is crucial.

One of my favorite quotes is by Mark Hyman, MD: “The power of community to create health is far greater than any physician, clinic, or hospital.”

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September 1, 2023 Columns by Danita LaShelle Jones

An important parenting lesson for raising a child with HAE

Connecting with people who understand

Last week, Ladybug and I had the opportunity to attend the HAE International Regional Conference Americas in Panama City, Panama. While each workshop was understandably geared to be informative, at the end of each one, my world changed more. There was hope in every person who uttered the conference theme “take action.”

But it was so much more than a hope-filled activity.

As Ladybug and I got ready for the second day’s sessions, I explained that I would attend the ones tailored to adults and she would go to the youth meetings.

“Finally, I won’t be the only one in the room,” she replied.

She wasn’t. She shared a space with more than 60 other young people around her age. That reminded me of something that had happened when we arrived at the hotel the previous day.

I received the biggest hug from someone from the US Hereditary Angioedema Association whom I had been speaking with online since 2020. Although I come from a “hugging family,” this hug was from someone who understood what we were going through.

Suddenly, all the stress I’d experienced from acquiring physician travel notes, packing Berinert in frozen gel packs to last the entire flight, praying that we wouldn’t have issues with customs, or calming Ladybug during an uncharacteristically rough flight melted away.

We were surrounded by more than 600 people from 19 countries, all of whom understood us.

At the farewell dinner, as we laughed with a family about how the chaotic unpredictability of HAE plays into a busy life, or when we watched people celebrate the end of a successful conference, or when I met researchers and physicians who are dedicating their lives to finding solutions, or when I received more hugs, I wished I could go back to that mom in 2015 who couldn’t figure out why her 6-year-old’s pinkie felt numb. I wished I had a time machine so I could talk to that frustrated mom in 2018 whose daughter’s unexplained swells and “rashes” were causing absences. I wished I had the power to teleport to that pediatric intensive care unit in 2019, where a quietly sobbing mom watched her 9-year-old struggle to breathe, or visit the same mom in 2021 who struggled with hearing that Ladybug’s excellent doctor knew what she had.

I wanted to return to the beginning and tell myself to find our community immediately, to reach out to people who know. Because even though it doesn’t change the circumstances, it makes them better.

Unfortunately, there’s no such thing as time travel. There are no spoiler alerts for rare disease journeys. But there is a community filled with people who know more, are further along in their medical journey, and have been where you are. And sometimes, finding that community is the best thing you could possibly do.

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.