Living with myasthenia gravis changed how I saw chronic illness

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by BioNews Staff |

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Pearl Moffett

Pearl Moffett had a myasthenia crisis at age 48, following a diagnosis of chronic lymphocytic leukemia. (Courtesy of Pearl Moffett)

This is Pearl Moffett’s story:

My experience with myasthenia gravis (MG) opened my eyes to the suffering that a chronic illness can bring. 

In August 2020, at age 48, I was diagnosed with chronic lymphocytic leukemia and I found out later it was most likely my leukemia that caused the myasthenic crisis I had just four months later.

On Jan. 11, 2021, I woke up and couldn’t speak — I slurred my words — and couldn’t hold my head up. I thought, “Was I having a stroke?” I was admitted to the hospital and within 24 hours, lost the use of many of my muscles. I couldn’t hold up my head or arms, couldn’t walk, I had double vision and it was difficult to see. Swallowing and breathing were difficult. The doctors immediately recognized what was happening as MG and told me I was in a bad crisis.

I had never heard of the illness and was terrified. On the first day, they rushed me to surgery and installed some ports in my neck. Then I had a four-hour plasmapheresis session where they removed my plasma, reconditioned it, and put it back to eliminate the antibodies that had flooded my body. They continued this every day for five days.

I didn’t respond and each day got worse. I then started on intravenous immunoglobulin (IVIG) and underwent seven treatments that I slowly began to respond to. By this time, I was on oxygen and the only way to get my medication down was to crush it and put it in applesauce. It wasn’t long before I was choking on that too. When I woke up at night choking, I knew the ventilator was next. I called the hospital chaplain and had the nurse bring me “end of life” papers to sign. I had very little hope that I would survive.

Pearl Moffett

Pearl Moffett said her experience with myasthenia gravis changed the way she saw chronic illness and she is committed to helping people so they don’t have to face their disease alone. (Courtesy of Pearl Moffett)

A few weeks later, I’d started to respond to the treatment enough that I was discharged and told I’d have three months of rehabilitation — occupational therapy, physical therapy, and speech therapy. I had to work every day to strengthen my muscles and learn how to speak again. It was the most difficult thing I’ve ever done.

I remember not being able to roll over in bed and having to slide my head because I couldn’t lift it. Myasthenia gravis has had a huge impact on my life and changed the way I saw people with disabilities. When I went to my doctor appointments, it took a long time to walk in and signing all the paperwork was so difficult. 

I’ve since been diagnosed with another rare disease that’s taken another year away from me. I’m much better now and my passion is to help people get to their doctor appointments, giving support and doing anything I can to help. It’s difficult to go through a challenge like this one alone.

In recognition of Myasthenia Gravis Awareness Month in May, the MG Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by MG, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #MGSpotlight, or read the full series.