Promptly treating HAE means getting the steps right

An Olympic athlete provides a caregiving strategy for this HAE family

Danita LaShelle Jones avatar

by Danita LaShelle Jones |

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“1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, kick!”

At the time, I didn’t know her name, but track star Sandra Farmer-Patrick appeared in one of my favorite commercials in the early 1990s. In this commercial for running shoes, while a montage of Farmer-Patrick shows her preparing to practice running hurdles, we hear her voice say, “People ask me what goes through my mind as I race.” Then, after several breaths, she reveals that she counts the steps in her head before actively telling herself to jump.

“1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, kick!” Farmer-Patrick yells. She needed to count the correct number of steps every time to jump over her hurdles successfully.

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After that, I became obsessed with Olympic-level track-and-field competitions. There was something about watching those incredible athletes glide across the track before leaping over the hurdles that I found amazing. But because of that commercial, I realized that jumping the hurdles was not just about speed and agility but also proper timing and steps.

Suppose an expert runner misses the timing from the starting block to their first hurdle or between hurdles. In that case, there’s a huge possibility of them falling or endangering the other athletes around them. This means that the first sign of hesitation or even the slightest delay could lead to a catastrophe.

Proper steps, timing, and no delay are equally crucial in other strategies besides track and field.

When our daughter, whom we lovingly call Ladybug, was diagnosed with hereditary angioedema (HAE), we learned very early that treating her during facial swells, intestinal flares, and even prodromes took quick steps and expert timing.

The moment I notice that Ladybug seems tired or her face seems to be puffier than usual, I should start counting the steps:

  1. Is she having an allergic reaction?
  2. If 1 is true, treat it.
  3. Start hydrating her.
  4. Send her for a warm shower.
  5. Unbox Berinert.
  6. Prepare syringes.
  7. Find a vein and push saline.
  8. Push Berinert.
  9. Give Tylenol for discomfort.
  10. Observe Ladybug.
  11. Check the next morning.
  12. Make note of any improvements.
  13. Make sure she hydrates.
  14. Administer Berinert 24 hours later.

These steps are specific to how Ladybug’s HAE flares are treated. If I hesitate or delay any of the steps in my “counting,” we’re headed for danger.

It’s important to note that as a caregiver of a person with a chronic illness, the 14 steps can change. Sometimes I trade out the steps with the treatment Takhzyro (lanadelumab). Other times, we incorporate different strategies regarding her allergy shots or asthma. However, implementing the correct steps is always necessary to get Ladybug over the hurdles she encounters in her health journey.

While running into a hurdle may lead to injury for a runner, for someone with a chronic illness, running into a hurdle can lead to extreme discomfort, cumbersome trips to the emergency room, and eventual hospitalizations. Proper training to learn the steps that are right for her took a lot of time, but recently, it feels as though we’ve finally found a rhythm.

Does that mean that we don’t fail sometimes? No. Does that mean we win every race? No. But we have figured out the steps we need to take to overcome some of her health hurdles, and sometimes jumping those can lead to some of our greatest wins.

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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