Why there’s power in sharing our angioedema stories

We can glean tidbits of useful information if we pay attention

Danita LaShelle Jones avatar

by Danita LaShelle Jones |

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“I sat there for almost 20 minutes,” my husband, Paul, told me as he recapped the moment from his day.

Although my day was filled with errands and meetings, he’d begun with what he’d expected to be an extensive visit to the Department of Motor Vehicles (DMV) to renew his driver’s license.

The trope of spending hours in the DMV to take care of vehicle-related matters is in many movies and television shows. These scenes, such as a hilarious one from “Zootopia,” illustrate what it may feel like when navigating the long lines and extensive paperwork.

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In real life, however, while some would agree that conducting DMV business isn’t that bad, the stereotype may not be completely inaccurate.

After 20 minutes of waiting, Paul glanced at the screen and saw they were past the number he’d pulled. With no one to ask in the lobby area and no way to enter the business area without the number being called, my husband did what any person would do: He went to the automated machine and pulled another number.

“As soon as the number came out of the machine,” he told me, “the automated voice called it over the loudspeaker. I was in and out in 10 minutes after that.”

We laughed about the idea of him sitting there longer than he needed, but we chalked it up as a glitch in the system.

A few weeks later, after realizing I needed to renew my driver’s license, I headed to the same building. After pressing the correct button on the automated machine, I waited as the ticket shot out of the little slot. Almost simultaneously, I remembered my husband’s story.

As I pulled the ticket from the machine, I listened to the voice over the loudspeaker.

“Now serving L390,” it mechanically bellowed.

And sure enough, that was the ticket I was holding. For the first time in my life, I was in and out of the DMV in less than 10 minutes. My husband’s story prepared me for what to expect.

When our daughter, whom we lovingly call Ladybug, was diagnosed with hereditary angioedema (HAE) in 2021, we’d never heard of the disease and had no idea what to expect. Every symptom surprised us. Administering at-home meds was overwhelming, and I spent many nights anxious about what would happen the following day.

Then, about six months after her diagnosis and after joining a support group of caregivers and patients of HAE, something changed.

“If you’re looking for a vein for her infusions, sometimes hot showers help,” one person suggested.

“You may know a flare is coming if you notice a change in her energy,” another person advised.

Soon I had many stories and experiences from others I could recall. And just like my DMV experience, our HAE journey became a little easier to navigate because I knew what to expect.

The religious leader Dieter F. Uchtdorf, in a great quote, said, “Sometimes a single phrase of testimony can set events in motion that affect someone’s life for eternity.” Whether we’re a caregiver or a patient, it’s always important to continue to share our stories. We never know whose life we may make a little easier to bear.

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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