The unsung heroes of hereditary angioedema treatment

For months, a marketing team did an excellent job building up one of the most incredible hip-hop collaborations. Even critics of the genre couldn’t help but wonder what the 2022 Super Bowl halftime show would produce.

Finally, after the players returned to their locker rooms and the commentators ceased their conversations, the lights dimmed in the stadium and the show began.

As the music started, an aerial view of the field revealed six white structures depicting a neighborhood in Compton, California, including strategically placed staircases, roofs that held live bass trios, a four-piece band complete with a white piano, and a studio that was lowered or raised, depending on the song.

Most impressively, the entire structure sat atop a lit aerial map of Los Angeles that covered nearly all 100 yards of the field. And the cherry on top? Three drop-top convertibles sat in front of the structures, ready to drive away at any moment.

For fans of hip-hop music, the stage was a sight to behold. Rappers and singers would appear on the roofs, explode out of the side walls, or hang upside down as they performed. They even used the stairs to get from one roof to the next, sometimes with dancers in tow. The performance was so compelling that it made No. 4 on NBC Sports’ recent ranking of the Top 15 halftime shows in history.

But the real heroes of that show were the stage crew.

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Obtaining treatment for our daughter was the toughest battle

Whenever any performer agrees to appear in the Super Bowl halftime show, whatever they plan has to be set up in less than seven minutes and removed in less than six.

Because of the massive movement during the presentation, there was no room for loose screws, misplaced staircases, or a car being a millimeter off; such a mistake would spell danger for the performers. The stage crew did their job so that the performers could do theirs.

So often, the behind-the-scenes people don’t get recognized or appreciated.

When our daughter, whom we lovingly refer to as Ladybug, was diagnosed with hereditary angioedema (HAE), we were grateful for the doctor who finally gave us answers. Whenever anyone asked us about the HAE diagnosis, we immediately praised him and his medical team for everything they did. Whether it was guiding us through understanding her flares or taking our frantic phone calls when we were confused or worried, Ladybug’s physician, as far as we were concerned, deserved a star on the medical walk of fame.

And then something happened that made me realize he wasn’t the only person who needed celebrating.

A few months ago, I found myself home alone and capitalized on the moment by finally taking a much-needed nap. Not long after falling asleep, I was startled awake by incessant knocking on our front door. I finally opened the door to a relieved UPS driver holding a box in his hand while a larger one sat at his feet. The contents of the boxes? Berinert and Takhzyro (lanadelumab) — Ladybug’s lifesaving emergency and preventive medications for her HAE.

“Oh, good,” he said as he set it down. “I was going to keep trying until somebody opened it.”

Through conversation, I found out he had been ringing the doorbell for quite some time and had resorted to knocking, hoping someone was inside.

He’s no stranger to our porch. We’ve received countless medications since 2021, with the driver sometimes braving terrible weather conditions because he knows there’s medication in those boxes.

But it’s not just him. I’m grateful for the nurses who trained us to administer these medications at home, vowing not to leave until we were comfortable doing it ourselves and giving us direct numbers in case we had any issues. In addition, I praise the social workers associated with the pediatric emergency room. Because of them, Ladybug’s treatment is rarely delayed if she’s experiencing a flare that needs more intervention.

And there are so many more! The insurance liaison who dedicated her time to hundreds of emails and phone calls until Ladybug’s prescriptions were approved. The amazing child care team on the pediatric floor of the hospital, who engage her in games, crafts, videos, stories, and even a visit from a friendly service animal. Or the U.S. Hereditary Angioedema Association, which helps our family navigate the hardships of HAE.

These are the heroes who work long hours behind the scenes so that we feel supported as caregivers and empowered to perform at our best.

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.