How we protect our daughter with LEMS during cold and flu season

Immunocompromised patients require extra precautions to stay healthy

Lori Dunham avatar

by Lori Dunham |

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It’s that time of year again: the dreaded cold and flu season. I’ve never been more aware of it than I am today. Yes, I’m older than I once was, and sickness seems to hit me harder and last longer than it did in my younger years. However, it’s not concern for myself that keeps me up at night, but rather thoughts about my daughter and her ability to fight illness, should she come down with something.

After Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS), cold and flu season took on a whole new meaning. Of course, the arrival of COVID-19 significantly increased our worry as well.

We had to ask — and answer — questions we’d never thought about before. How do we help Grace navigate a high school setting while immunocompromised? What are the best ways to prevent illness for someone with a rare disease? Will Grace’s body be able to fight off the smallest germs? Are there ways to promote healing once plagued with the flu or the common cold?

Everyday illnesses were no longer minor disruptions for our family. Now, they were major events that could knock Grace off her feet. She wouldn’t miss days of school, she’d miss weeks.

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When Grace catches a cold, it can linger for weeks at a time. Low-grade fevers often persist for days on end, leaving her lethargic and worn out. It’s not only an unwanted disruption in her daily schedule, it also takes a toll on her physically.

A cold or flu usually intensifies her LEMS symptoms, including weakness. Usually, Grace is strong because of her treatment protocol and daily medications. However, when she is sick with a cold or flu, she grows so weak that walking becomes laborious.

Preventive measures

Of course, we do our best to prevent illness. We diligently clean and disinfect our home, cars, and her workspace. Grace is careful to wash her hands often and avoids touching her eyes, nose, and mouth. She prioritizes sleep, exercises regularly, and eats a healthy diet, all in hopes of building strength to combat sickness.

Additionally, those of us around her take responsibility for helping her stay healthy. Grace can’t get vaccines because her treatment suppresses her immune system. Therefore, those closest to her make it a point to get vaccinated.

We do everything we can to minimize Grace’s exposure to colds and the flu. It’s a team effort. Once we take all possible precautions, the only thing left to do is anticipate the end of cold and flu season.

Let the countdown begin!

How do you work to stay healthy during cold and flu season? Please share in the comments below.

Note: Lambert-Eaton 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 Lambert-Eaton News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia syndrome.


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