The journey it took to get here is what made the day significant

Birthdays are worth some extra applause after years of living with HAE

Danita LaShelle Jones avatar

by Danita LaShelle Jones |

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At the sound of her name, the entire auditorium erupted.

Seconds later, everyone, even the losers, were on their feet, with some crying tears of joy. The standing ovation lingered for almost two minutes, and even Oprah Winfrey walked onto the stage shouting congratulations. Susan Lucci had finally won a Daytime Emmy for her role as Erica Kane on the soap opera “All My Children” after having been nominated 19 times.

“I want to thank each and every one of you in this room,” she said, “… and the fact that you have thought that my work was worthy of notice 19 times is something I will treasure always.”

Most of the time, when actors are acknowledged for their work, the win is met with excitement, smiles, and maybe tears. It seems more special, however, when a win happens after years of being nominated. Whether it was Leonardo DiCaprio’s Oscar win after five nominations, cinematographer Roger Deakins’ win after 13 nominations, or Meryl Streep’s third win separated by 13 nominations, the celebrations were more significant because the journey to the victory took so much longer.

In our house, and under different circumstances, we experience similar celebrations.

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Our ‘significant’ journey with HAE

Our world had long been turned upside down by the time our oldest daughter, our Ladybug, neared her 10th birthday. I found myself watching helplessly as emergency room staff worked to keep her throat from closing. My daughter was having an allergic reaction to something she’d digested, but it felt like her body was waging war against any treatment they could throw at her.

When she was transferred to the pediatric intensive care unit with little improvement, the new staff contacted her new doctor, who advised giving her a Berinert infusion.

Hours later, Ladybug was chatting away in her hospital bed as if what had just happened were a distant memory.

At the time, I didn’t know she’d had the first of what would be two laryngeal flares. Because the Berinert infusion worked, it was the confirmation her doctor needed to diagnose her with hereditary angioedema (HAE). Our long journey finally brought us to a name.

We do our best not to hide how challenging our experience with HAE is. Many tears have been shed, and Ladybug has been close to death numerous times. Her symptoms and multiple hospital stays have occasionally brought our lives to a standstill.

Many times, Ladybug has been just out of a hospital or hours away from going back to one. My husband and I have spent many nights hoping she’d stay out of the hospital long enough to have a good Thanksgiving, Christmas, or New Year’s. A few times, we barely made that goal.

So whenever we get to the end of October and Ladybug sees another birthday, we celebrate big. We know now that with proper preventive medication, recognizing early onset symptoms, and her incredible physicians, she’s not only having great holidays, but many great days.

When our Ladybug blew out her candles this week for her 14th birthday, we cheered and shouted. Did she hit a “significant” age? No. Our genuine joy came not just because of the day itself, but because of the journey it took to make it here.

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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