The confusion that comes when HAE patients feel good

When caregiving is no longer required, what do you do with all your free time?

Danita LaShelle Jones avatar

by Danita LaShelle Jones |

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The music had ceased, and the platform guests were gone, but the audience remained in their seats, slightly stunned at what had just transpired.

I stood in the door of the backstage area, still wearing my headset, chuckling at the crowd’s reaction.

The featured day of this annual conference (whose origin predated my birth) traditionally lasted at least five and a half hours. Additionally, much to the chagrin of some, the morning session would end well into the afternoon, forcing most individuals to speed through lunch before returning for the afternoon sessions.

When I was appointed stage manager in 2016, a position that the conference administrators never officially had in place, I knew I had an impossible task ahead of me. The event needed to end earlier, and I would succeed or fail in front of thousands.

After meticulously studying the flaws from the previous years and painstakingly creating run sheets, the big day finally arrived.

When closing remarks were uttered at 12:50 p.m. instead of 3, I breathed a sigh of relief. Not only had I completed the task, I’d also set a record.

But there was a problem.

“I can’t believe this,” I overheard an audience member say. “Our lunch reservations were for 2:30 p.m. What are we supposed to do now?”

Soon, many people began to complain. Instead of being happy they had more time to relax or return to their rooms and nap, they were upset that they had more time.

While not everyone felt this way, I completely understand why some were irritated with their newly acquired free time.

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Oh, the relief that comes when an educated expert arrives to help

Learning to prepare for good days

When our daughter, whom we lovingly call Ladybug, was officially diagnosed with hereditary angioedema (HAE), we were already drowning in her time-consuming, untreated illness.

I was used to long drives to doctors’ offices out of town, hours in the emergency room, days in the hospital, and countless sleepless nights. I was used to my time not being my own. Every single moment of the day was dedicated to Ladybug; if it wasn’t, it had either just been or was going to be.

By the middle of 2021, I’d resigned from my job, fully expecting to continue to dedicate every waking moment to caregiving, forgoing free time, date nights, and even future dream jobs to HAE. And initially, that’s what happened.

But eventually, we found the right doctor and the correct medicine. Then, by the middle of 2022, something remarkable happened. After consistent preventive treatment with Takhzyro (lanadelumab) and occasional emergency treatment with Berinert, Ladybug started to feel better.

Trips to the hospital became less frequent, I began to get fewer phone calls from her school, and we could go days without a hand tingle or stomachache. I finally started getting my time back and had no idea what to do next. Instead of embracing my newfound freedom, I started resenting it. What was I supposed to do when it seemed like there was nothing to do?

I realized that sometimes we as caregivers spend so much time administering medications, not sleeping, or even fighting doctors or insurance companies that we’re lost when we finally don’t have to. We spend so much time preparing for the worst that we forget to prepare for when things are good.

I got invited back as stage manager at the conference the following year. And even though I didn’t match my 12:50 p.m. ending from the previous year, I was proud of my 1:10 finish. This time, the audience, having experienced it before, hurried to their catered lunches, additional meetings, and naps; they now knew how to plan.

Admittedly, I’m still learning to embrace the free time when Ladybug feels great. And every once in a while, I may even catch myself planning for those better days.

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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