Simply does it when explaining a hereditary angioedema treatment

Giving easy-to-follow directions is a skill every caregiver should have

Danita LaShelle Jones avatar

by Danita LaShelle Jones |

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If this wasn’t a Thanksgiving emergency, I didn’t know what was.

After an ambitious shopping trip in 2008, I was face-to-face with a rather large raw turkey just out of the package. As a fresh victim of “it seemed like a good idea at the time” and with less than 24 hours before the big dinner for in- and out-of-town guests, I was looking at something I’d never attempted to cook.

Growing up in the South, I was no stranger to the kitchen. In fact, every other Thanksgiving staple was already mixed, ready to bake, or resting to cool before being stored for the next day. But the turkey was the single obstacle that could solidify or ruin my reputation as an impressive cook.

I had everything I needed. I’d even bought fancy roasting bags to accommodate the oversized bird, but every recipe I consulted had numerous steps and overcomplicated vital directions.

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Finally, with no other option, I sat down at my kitchen table and did the only thing I could do: I called my dad.

Instead of getting a speech about how no one should attempt a massive task hours before the big meal, my dad chuckled.

“How big is the bird?” he asked.

Soon, without video chat or pictures, my father walked me through a lesson in roasting a turkey to perfection. What was most impressive was his ability to explain the process so simply.

I never knew that simple explanations could translate into a lifesaving necessity.

Directions from hundreds of miles away

When Ladybug, a nickname we call our oldest daughter, was diagnosed with hereditary angioedema (HAE) in 2021, we were offered in-person training when her at-home medications became available. By the end of that year, I knew how to find the perfect vein to administer her Berinert infusion and how much skin to pinch when inserting the needle to give her Haegarda. When we switched to Takhzyro (lanadelumab) a year later, we welcomed the live video training with the nurse.

Although my husband, Paul, was there for every training, we had an unspoken understanding that I’d administer the medication while he would supply the shoulder to cry on. Since we were comfortable in those roles, I never considered that he’d have to take over in case I wasn’t around.

I had no doubt he could do it; he’d seen me do it dozens of times. And when a business trip took me out of town on a preventive medication day, Paul had to step into place.

While at a hotel hundreds of miles away, I picked up my phone when I saw his name flash across the screen.

“Walk me through this,” he said into the phone.

With his hands full and a frantic patient who wouldn’t be great at holding a phone, I knew a simple FaceTime was out of the question. Without flowery words or unnecessary tangents, I talked my husband through the 10-minute process of giving our daughter the medication she needed.

As odd as it may sound, every caregiver needs to be able to give simple instructions regarding a loved one and their treatment, medical plan, and emergencies.

Albert Einstein once said, “If you can’t explain it simply, you don’t know it well enough.” Our ability to explain simply will help us further understand what we’re doing, and one day, if we aren’t there, it may also save a life.

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.


William Robinson avatar

William Robinson

Well done Danita and I`m sure the bird was too ! Simple and to the point so keep up your good work. I have AAE, Bill


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