‘Pace yourself’ is not what my daughter with HAE wants to hear
Thinking she's invincible can be her 'greatest ally or her greatest enemy'
After three months of after-school rehearsals, costume checks, stage makeup trials, and an eight-show week, we’d finally come to the last performance of the musical our daughter’s performing arts school was putting on.
But there was to be no break in the action. Rehearsals for the dance show started the next day. And with two weeks of rehearsals, both during and after school, and three back-to-back shows, our daughter we lovingly call Ladybug seemed to be a force of nature.
But on the last song of the very last show, I could see the fatigue in her movements. And by the time I met her at the stage door, she had a noticeable puffiness to her face.
“I don’t feel good,” she said as we got in the car.
After two doses of Berinert (human C1 esterase inhibitor) at home, separated by 24 hours, and an impromptu visit to her doctor, Ladybug spent about three days in the hospital.
‘She’s going to have to pace herself’
This wasn’t the first time we saw something like this from her.
After she was diagnosed with hereditary angioedema (HAE) in 2021, we spent many exhausting days trying to get her to “take it easy” in her physical education class or at recess. We started to notice, even then, that if she played hard in phys ed, fully exerted herself at recess, and followed it up with gymnastics, we’d end up at the pediatric emergency room later that week.
We didn’t have a preventative medication then and Berinert was only accessible at the hospital. And there was nothing else for her to do at school except play.
Her symptoms got better when we were able to give her medicine, but she was also getting older and wasn’t playing as much anymore.
“She’s going to have to pace herself,” her doctor told us after we had battled two flares in two weeks toward the end of last year. “I’m sure she’s amazing at everything she does. But maybe let’s not do every rehearsal. And maybe not perform in every single show. It’s OK.”
Those words seem like the kiss of death to a 14-year-old who’d just found her niche in the performing arts.
“I hate HAE,” Ladybug said as we sat in the hospital in November. “I can’t do anything!”
“That’s not true,” I said. “You can do everything, just maybe not all at once.”
So now, with rehearsals gearing up for the spring show, we’ve come to an understanding. She realizes that she either paces herself during rehearsals and does all the performances or overexerts herself during rehearsals and maybe misses one or two performances. Either way, she needs downtime, whether she gives it willingly or not.
I have no idea how it’s going to go. Like any teenager still navigating a chronic illness, when she feels great, she thinks she’s invincible and that attitude can be her greatest ally or her greatest enemy.
So, whether I’m there to give her a standing ovation or prep her for an at-home infusion, I will do my best to teach her how to rest now so she can enjoy what she loves later.
Ovid, the poet, said it so simply. “Take rest; a field that has rested gives a bountiful crop.”
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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