How I avoid getting sick with aHUS and two young children

Fifteen milliliters of children’s ibuprofen, a 75-count pack of Clorox disinfecting wipes, boxes of Kleenex with aloe, a large can of Lysol disinfectant spray, filled hand-soap dispensers at each sink, an empty trash can, rubber gloves, and antibacterial dish soap. That all may sound like an advertisement for a drugstore, but it’s actually an arsenal of things I had to use to make it through the weekend with a sick child.

Summer break has ended, and my boys are back in school. I’m mostly relieved by my newfound freedom with them gone all day, but one downside is their exposure to other children’s germs. Unfortunately — and inevitably — one of them got sick.

For most people, that wouldn’t be a big deal. But it’s big in our home because I take monoclonal antibodies to suppress my immune system as a way of treating my atypical hemolytic uremic syndrome (aHUS). So getting sick is complicated for me and could even be dangerous.

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I suffer from various ailments; aHUS, the worst of them, nearly killed me in the fall of 2020, when I went into multiorgan failure and spent nearly two months in the intensive care unit. Doctors initially thought I was experiencing complications of my lupus and immune thrombocytopenia, but five weeks of testing revealed that I’d actually developed aHUS.

My other autoimmune conditions are troublesome and affect my daily life, but aHUS causes more dangerous complications. With it, my immune system destroys my red blood cells (hemolytic anemia) and causes small blood clots to form in multiple organs.

There’s no cure for aHUS, so the closest thing to a fix is to suppress my immune system, which can be done with one of two drugs: Soliris (eculizumab) or Ultomiris (ravulizumab-cwvz). I’ve been on Soliris for nearly five years. Because of this, I must be extremely careful about being exposed to illnesses.

Still at risk, even without my career

When I became dangerously ill in 2020, I’d been working in education for over 20 years. That meant catching seemingly every virus or bacteria that swept through the school. Because I had lupus, my immune system was already weak and compromised. I’d get sick, take a round of antibiotics, then get sick with something else a few days later. It was exhausting.

I was devastated to learn that a lifetime of immune suppression meant my career in education was dangerous for me. Yet even if I stopped working, I still had two little boys who were in school around sick children. So I had to make a plan.

When school starts each year, we switch to what I call our “school protocol” to mitigate the threat of my kids spreading illnesses to me. These practices include:

• Having disinfecting spray at the door to spray down the kids when they walk in
• Swapping shoes for slippers at the door to reduce germs being tracked into the house
• Avoiding eating or drinking from the same food or drinks as my children
• Avoiding snuggling on the couch or in bed when one of them is sick
• Disinfecting the inside of our car once a week
• Disinfecting doorknobs, cabinet handles, and the refrigerator handle
• Keeping the children as healthy as possible with proper nutrition, sleep, and exercise
• Placing hand sanitizer and soap dispensers all over the household and reminding the children to use them often
• Removing the children from the kitchen while I’m cooking.

Being unable to snuggle with the kids when they’re sick is the hardest thing for me on that list. But it’s one of the most important. Both of my kids brought COVID-19 home in early 2022, and naturally, as their mother, I felt bad about it and snuggled with them on the couch and in bed. Of course, I caught the virus and became the sickest I’d ever been in my life.

Additionally, a simple cold or the flu can be dangerous for me. I’ve never been truly healthy, but I certainly didn’t worry this much before my aHUS diagnosis. It’s strange to ride that fine line between needing a medicine to stay alive and knowing that the medicine can contribute to me getting very sick.

Note: aHUS 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 aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.