Sometimes, even our best efforts aren’t enough
Even though I do all I can for my daughter, her HAE is unpredictable
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With six seconds left on the clock, the Titans had one chance to clinch the title of the 2000 Super Bowl champions.
As a student at Fisk University in Nashville, I’d quickly become a fan of the Tennessee Titans. Because the school’s campus was seven minutes from the stadium, it wasn’t uncommon for us to hear the cheers on game days, the fighter jets shortly after the National Anthem, or the game day blimp as it made a U-turn over our heads.
By the time the newly branded football team made it to the “big game,” hundreds of us had packed the campus cafe, crowding around a 60-inch TV, to cheer for our Nashville neighbors.
The game was a nail-biter, and with six seconds left, the Titans had a chance to win the game by scoring a touchdown. We sat on the edge of our seats as quarterback Steve McNair threw to Kevin Dyson, who ran with all his might toward the end zone.
In a moment that has haunted every Titans fan for 26 years, Dyson was tackled one yard from the goal line.
The cafe erupted in groans, cheers, and immediate chatter. I just sat there. I couldn’t believe that after all that work, they lost by a measly 3 feet.
It was incredibly disappointing, especially after an amazing AFC victory for which Dyson had also made a famous play.
Losses after incredible victories seem to hit harder — especially when you’ve done everything you possibly could.
When the results don’t reflect our efforts
When our daughter, whom we lovingly call Ladybug, was diagnosed with hereditary angioedema (HAE), it took us a while to find a successful plan to make her days easier.
At first, it was fairly difficult. I felt like we were always chasing her flares. Whether I was struggling to understand when to administer her emergency infusion or trying to find comfortable spots to push her preventive meds, I felt like I had more losses than wins.
Then, we found a rhythm. Ladybug began to detect her symptoms earlier, and I was doing great with giving meds, keeping up with appointments, and avoiding hospital visits. We were winning!
Until we weren’t.
Around the end of 2024, it felt like no matter what we did or how much I tried, we were in the hospital at least once a month. Even after all our efforts, I felt like we were one yard from the goal line.
Over the following year, I internalized what seemed like failure. I thought it was my fault that Ladybug couldn’t get through more than two weeks without full medical intervention. This wasn’t the case at all.
HAE is often unpredictable. There are times when it can do exactly what we’ve researched and read about. And then there are other times when even the doctors are scratching their heads. Like many rare disease families, we’re still learning the best practices for our loved ones who live with it.
And I’ve finally learned that even if all my efforts don’t bring about the results I was hoping for, I haven’t “lost the game.” We are winning because we get up and keep trying every single day.
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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