Our Daughter With Lambert-Eaton Myasthenic Syndrome Fights Off COVID-19 — Again

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by Lori Dunham |

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Our world has changed over the past few years. Around the globe, COVID-19 has altered the way we all live. While we are no longer required to stay indoors and close our shops like in 2020, the world is still different than it was. Our new reality includes frequently isolating, dealing with supply chain issues, and worrying about new variants of the coronavirus.

I recently wrote about our family’s goal of “taking control of our summer” by living life to the fullest this season. At the start of 2020, we had already lost a year after our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome. I felt suffocated after a year of COVID-19-related lockdowns and restrictions in addition to the year we had spent in and out of hospital waiting rooms.

So when we were faced with yet another summer of cautious living because of spikes in the number of COVID-19 cases across the country, I decided that we needed a new approach. I did not neglect caution, though, as it is necessary to protect Grace as best we can from exposure to the coronavirus and other viruses. With many safeguards in place, we calculated the risk of various activities and planned our summer accordingly.

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We got outdoors as much as possible, frequenting our neighborhood pool. When the weather was bearable, we went to the beach with close friends and had others in our home for dinner. I have learned that cultivating community is not a luxury, but rather a necessity. So we planned small get-togethers and short family vacations. Grace worked at her part-time job. Things were going smoothly.

Then, as one would expect these days, our summer came to a screeching halt when Grace woke up one day with a sore throat. I watched her carefully as she developed mild cold symptoms. A stuffy nose, low-grade fever, and headache followed. Soon, she tested positive for COVID-19, and we began the quarantine process we are all so familiar with.

This was Grace’s second bout with COVID-19 after having it in January. Back then, Grace had moderate cold symptoms with a pretty significant cough. Her rheumatologist prescribed her the monoclonal antibody sotrovimab immediately after the positive test. Within two days of receiving it, Grace’s symptoms were gone.

So as soon as we received another positive test, I knew to immediately contact Grace’s rheumatologist. However, access to monoclonal antibodies was more difficult this time. It took us about seven days to get her an appointment for a new antibody, bebtelovimab.

Grace continued with a mild sore throat and cough, but her fatigue was extreme. On day nine, we were instructed to go to the infusion center, where the antibody was ready for her. The IV infusion was delivered in 30 seconds.

Thankfully, Grace’s symptoms had mostly resolved by the time she received the antibody. This was good news, and it was encouraging to know that Grace was able to fight off COVID-19 almost completely on her own. However, the antibodies gave her body a little nudge toward complete healing.

As we march into the dog days of summer, we continue to cautiously live life to the fullest. This is our new normal. We seek to find the balance that keeps Grace physically healthy while also filling her life with community, balance, and worthwhile experiences.


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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