Three Share Their Life With MG in Online Documentary Series, ‘A Mystery to Me’

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by Forest Ray PhD |

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Three people living with myasthenia gravis (MG) tell their stories in the three-part online documentary series “A Mystery to Me,” available from MG United, a patient-focused platform operated by Argenx.

“The strength and resilience of the MG community humbles us every day, and we felt compelled to tell the stories of these remarkable individuals to a broader audience. We’re proud to present A Mystery to Me to unite the MG community in raising awareness of a disease that is often misunderstood and inspire compassion in those who watch it,” Tim Van Hauwermeiren, CEO of Argenx, said in a press release.

Sponsored by Argenx and produced by Sarofsky Productions, the series follows Glenn PhillipsTeresa Hill-Putnam, and Vanetta Drummer-Fenton as they illustrate the complexities of living with MG, and how they and their families have adapted to meet the challenges. 

MG is a rare disorder in which the immune system mistakenly attacks the junctions where nerves meet muscles, interrupting their communication. Its symptoms, muscle weakness of the eyes, face and throat, and possibly limb and respiratory muscles as well, typically appear in adulthood.

Women are more often diagnosed in their 20s and 30s, while men generally first experience symptoms after age 50. By these ages, a person has established routines, activities, and career trajectories that don’t take a neuromuscular illness into account.

Drummer-Fenton was an honor student at her New York high school readying to enter college, and step team captain when her symptoms first appeared.

“One particular morning, I was getting ready to go to school, the train was coming as I was approaching the train station. I tried to run so that I could catch the train, and when I started running down the stairs, my legs completely gave out on me,” she said  in her docuseries.

In the time since her diagnosis, Drummer-Fenton has applied her experience to becoming a personal trainer to people with chronic illnesses.

Physical activity was also a huge part of Hill-Putnam’s life. She was a dance instructor, business owner, and mother of three. In her story, she describes the difficulty of trying to explain the there-one-day-gone-the-next symptoms of MG to her doctor, while searching for a reason behind what she was experiencing.

“What’s weird [is] when you go to a doctor and say, ‘OK, my hands, I can’t hold anything.’ But maybe that was yesterday, and today you can,” she said. “You feel kind of like you’re a hypochondriac, like you’re always complaining about something. But it’s all real.”

Phillips spent decades as a firefighter in rural Kentucky, rising to become the chief of his fire station.

“You talk about a mental battle going on in my head. Myasthenia gravis taught me a lot about what people go through that you just never understood before,” he said in his docuseries.

“The stories of these three incredible people are about confronting challenges that may seem impossible to surmount and finding the emotional strength to learn from and apply them to how we live our lives going forward,” said Ben Strang, who directed the documentary series.  

Due to COVID-19, the filmmakers used a contactless production technique that makes ample use of footage shot by the participants themselves.

“Vanetta, Glenn, and Teresa made the movies,” Strang said in a separate press release. “We basically told them how to film movies about their lives, and I love the final films. I really hope that they help people feel heard.”

“A Mystery to Me” is a free for streaming on MG-United.com. Viewers are asked to sign up to the platform, a step that is also free of charge.

2021 Myasthenia Gravis Survey Results

BioNews Survey Infographic

Myasthenia Gravis News conducted a survey from Feb. 11-March 28 to gain greater insight into the characteristics of the MG community and disease management. Results of the survey have now been published. Click on the image to view the infographic, and click here to read the story.