The remedy to feeling small is finding your rare disease community

Being an HAE caregiver can make you feel tiny; finding your tribe is essential

Danita LaShelle Jones avatar

by Danita LaShelle Jones |

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The houses seem so small.

That’s always my first thought when I’m on a plane. Usually, if I’m flying out of my hometown, the flight path always takes us over several neighborhoods as we ascend to 30,000 feet. If I’m lucky and snag a coveted window seat, I can look out the window as we race over a landscape that looks like an unorganized Monopoly board.

When I was younger, I was fascinated with the idea that the minuscule specks of people on the ground who occupied the tiny houses had no idea how many people were passing overhead. They were largely unaware of the lives inside each jet, which also looked like a speck to them.

But as I got older, I had the opposite perspective, wondering what happened in those tiny houses as I passed overhead. Were the people inside watching TV, washing dishes, or sleeping? Had they just returned from a long shift at work, or were they headed someplace special? Maybe they were standing in their driveway as I often do, watching the jet pass overhead, feeling like a single dot in a big world.

When you’re a caregiver for someone with a rare disease, that’s exactly how it can feel.

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Feeling like a dot

In 2021, when our daughter, whom we lovingly call Ladybug, was diagnosed with hereditary angioedema (HAE), I was hit with a wave of complicated emotions. While we were learning how to administer medication, detect the signs of oncoming flares, and organize the necessary elements to ensure she’d have a good school year, I felt like the tiniest dot in a big, rare disease world.

Until Ladybug’s doctor mentioned the possibility of HAE, we’d never heard of the disease. During all my searches on the internet and the countless conversations we had with medical personnel, we were oblivious to this world we had no idea we were already a part of.

After her diagnosis, I felt that we were facing an enormous problem, but anyone looking on from a distance at the grocery store, church, or even a plane high in the sky was just as oblivious as we’d been.

But then we discovered something remarkable.

When I fly, while I may see an occasional farmhouse that sits in solitude, the neighborhoods really get my attention. Those houses of various sizes and types all sit together. And the people in those houses may be friendly neighbors, having a sense of community and knowing they can depend on one another.

After months of feeling like a dot in 2021, I finally discovered our HAE neighborhood. And while some of the houses don’t look the same, we can share experiences, rely on one another, and not only survive, but thrive in our community.

Yes, there are bigger things in this world, but knowing that others are just like us makes it much less lonely.

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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