Why regular reviews are important when living with HAE
Going over information is crucial for both patients and caregivers
Whether I was wrestling with theorems in unified geometry, had to remember names of capitals in geography, or was forced to memorize elements on the periodic table in science, I was never a fan of taking tests.
Aside from the surprise of pop quizzes, I usually knew when a test was coming. Throughout the unit, the teacher would announce, “There will be a test on this later” or “This will be on your exam,” alerting us that we needed to pay extra attention to what we were learning.
Unfortunately, I was never the type of student who did well with “remember this for later” preparations.
During my sophomore year in high school, my world history teacher, Ms. Branum, an incredible teacher in her own right, announced our first-unit test a few weeks into the new school year. I was nervous. Although I paid attention in that class, my track record for recalling the necessary information was lackluster. But during her announcement, she did something I will never forget.
She handed out a review sheet.
Most of the teachers in my life up until that point made great efforts to review information before a test, usually using the review at the end of each chapter in the textbook. However, Ms. Branum made review sheets that contained everything she had covered. Whether the sheets included fill-in-the-blank sentences, page numbers, or bullet points, she ensured that her students could recall specific things that would be on her test.
I did much better whenever I got review sheets specific to the upcoming exam.
Reviewing information about HAE
When our oldest daughter, whom we lovingly call Ladybug, was diagnosed with hereditary angioedema (HAE), we had to give her a lot of information to help her better understand her disease. We made sure she understood the importance of never missing a dose of her preventive medication, educated her on how to avoid specific triggers, and got her to notice early warning signs of an attack.
As she got older, I was excited to include her in HAE forums and give her age-appropriate books. We even attended conferences together to meet others with the same disease.
But in the midst of all of this, I forgot the importance of reviewing information.
Recently, after noticing that Ladybug’s flares often coincide with her cycle, we got clearance from her doctor to administer Berinert (human C1 esterase inhibitor) right before it occurs to reduce the possibility of a major flare. While prepping her for an infusion, I noticed a slight rash on her skin.
“Is that a rash?” I asked her.
“Oh, yeah,” she nonchalantly replied as she scrolled on her phone. “It doesn’t really itch. Those sometimes pop up for no reason.”
“Do you have a flare after they pop up?”
“Usually,” she replied.
I paused. I remember educating Ladybug about prodromes and what they can look and feel like. But we’d had the conversation so long ago that I could easily see how she could forget. After asking a few more questions, I realized that the last three flares that put her in the hospital were preceded by a small rash somewhere on her body.
Ladybug needed a review.
While I administered Berinert, we talked in depth about prodromes, what to look for, and the importance of not ignoring symptoms or trying to hold off on getting a necessary dose of emergency medication. By the time we were done, she declared that she’d be more aware of what was happening with her skin.
As caregivers, even if our loved ones have been on their chronic illness journey for a long time, it’s essential to sit down and review information occasionally — not just for them, but also for us. A good review can always make the test a little easier.
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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