I’ve learned that severe weather and HAE have a lot in common
Just because they seem over doesn't mean they're completely over
It never fails. Around this time of year, it’s not unusual for everyone’s cellphone in our house to emit that piercing sound to alert us of an emergency notification.
And the emergency? Severe weather in our area.
Residents of northern Alabama, where I live, are used to hunkering down during severe thunderstorms and threats of tornadoes during April and May. Growing up here, it wasn’t uncommon for our favorite shows to get interrupted by our favorite meteorologists as they gave us second-to-second updates on wall cloud locations, tornado activity, and damage. Now, it’s cellphones, Google Home devices, and Alexa.
Moreover, because this type of weather is so common, many of us know how to read basic Doppler radar, recognize the signs, and sometimes “just tell” when the bad weather is coming. And because severe weather is so typical, we Tennessee Valley residents can tell you our weather plan when dangerous storms are detected nearby.
Recently, our family found ourselves in our designated safe space with blankets, pillows, a scared border collie, and our favorite meteorologist streaming on my phone. At one point, the meteorologist mentioned streets near our neighborhood as hail beat down on our roof. The danger was near, and we could only sit close and listen.
Thankfully, the storm moved over our house without causing damage. Unfortunately, many people in our neighboring communities and cities did not have the same experience.
During dinner, I continued to listen to the meteorologist mention other streets and parts of our city that were in the danger zone but were nowhere near where we lived. Then she said something that struck me.
“Even though this storm isn’t near your street, it doesn’t mean you’re completely out of danger.”
She was right. Sometimes, these storms can respawn where they once were and wreak additional havoc, depending on where you live. But we could breathe a little easier because we already knew what to do and had a plan.
Danger redux
The experience made me think about our daughter’s health.
When our oldest daughter, whom we lovingly call Ladybug, was diagnosed with hereditary angioedema (HAE), we finally had an explanation for her swollen face, ominously aching hands, and severe stomach pangs. Her medical specialist explained to us how to navigate these flares and walked us through the necessary medication so that she could live a comfortable life.
For a while, we did OK recognizing her symptoms and administering Berinert (human C1 esterase inhibitor), her emergency medication, so that everything would be OK. But after Ladybug’s initial infusion, she’d often flare again, not more than 48 hours later.
We dealt with months of what I heard another person in the HAE community call “cluster flares.” I always felt unprepared, frustrated, and confused. At the time, I thought that one dose of Berinert should do the trick. But that wasn’t the case.
One day, while venting my frustrations to Ladybug’s doctor, he replied with an all-too-familiar sentiment.
“Just because you treat her correctly the first time doesn’t mean the danger is over.”
Sometimes, Ladybug’s HAE symptoms require more than one dose of Berinert, separated by 24 hours, to do the trick. Now that we know this, we’re prepared.
It may seem cliché to compare HAE to severe weather, but as caregivers, we must be equally aware and prepared to ensure our loved ones’ health.
Yes, we know that sometimes things won’t always go as planned, but knowing all the signs and what to do helps all of us breathe 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.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.