A reminder that we need to stay vigilant to protect our health

My husband's case of COVID-19 brought home the risk of illness atop LEMS

Lori Dunham avatar

by Lori Dunham |

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Our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) in July 2019, when she was just 15 years old. To say this diagnosis changed our lives is an understatement.

Grace’s health deteriorated rapidly. We had to move to be close to her doctor. My husband changed jobs. Our girls changed schools. Our home needed to accommodate Grace’s new limitations from LEMS.

Change was the new normal. There was nothing to do but embrace it.

Shortly after our last move, the COVID-19 pandemic made its way to America. We were just learning to navigate life with LEMS, and the pandemic seriously complicated our efforts. Grace, with an autoimmune disease, was suddenly among the most vulnerable population. But we found that treating her symptoms with an immunosuppressant, Rituxan (rituximab), was most effective.

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This treatment, however, made Grace extremely vulnerable during the pandemic. We had to be hypervigilant about the possibility of bringing germs into our home. Regardless of our extreme caution, Grace contracted COVID-19 twice during that period. Both times she needed the aid of monoclonal antibodies to fight it off.

Today, we understand that COVID-19 isn’t what it was in 2020. But I’ve been reminded, once again, that a risk still exists. Whether it’s COVID-19 or a random cold or infection, Grace is still very much at risk for developing complications from common illnesses.

A cold’s consequences

I got this reminder when my husband recently returned to our Florida home with COVID-19 after a trip to Texas. His symptoms were mild. He only had a headache, minor head cold, and slight chest congestion. His illness lasted no more than three days.

Two days after my husband’s return, however, Grace began to exhibit signs of a cold. Unlike my husband, Grace’s illness progressed into a full-blown chest cold, low-grade fever, and loss of appetite. Unfortunately, she wasn’t offered monoclonal antibodies this time; instead, she was told to wait it out.

It took Grace a full 10 days to get over what was for the rest of us a slight cold.

Her recent illness was a much-needed reminder that we still need to stay vigilant as we continue to navigate Grace’s compromised immune system. We no longer have built-in safeguards, such as masks and social distancing, as we did in 2020. Now it’s in our hands to determine how to best protect Grace.

Over time, Grace has learned how to take control of these health decisions as well. She knows what activities are high-risk. In each case, she weighs that risk against the reward.

This summer, for instance, she’s made the decision not to help with vacation Bible school at our church. Usually she enjoys working with the kids, but inevitably she gets sick by the end of the week. That’s why she decided to forgo the activity this year to protect her health.

Although we’re four years out from the worst of the COVID-19 pandemic, those of us with compromised immune systems or fighting a rare disease need to stay vigilant for the betterment of our health.

How do you protect yourself from the spread of a cold or the flu? 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 myasthenic syndrome.


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