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Vancouver Islander raising awareness for rare autoimmune disease

June is myasthenia gravis awareness month, Linda MacMullen spreading the word
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Linda MacMullen (seen here with her support dog, Bailey) is hopeful a new treatment for those living with myasthenia gravis will ultimately lead to more independence for her and others. Photo by Terry Farrell

Linda MacMullen has been battling with a rare autoimmune disease called myasthenia gravis (MG) for over two decades.

This chronic disorder causes weakness in the skeletal muscles, which are responsible for a wide range of body movements and breathing.

Myasthenia gravis can affect various facial muscles, altering a person’s ability to smile, chew, swallow, and control their eye movements.

One of the most common symptoms experienced by people diagnosed with the disorder is becoming exhausted and feeling weaker following brief periods of physical activity or after performing everyday tasks.

“Symptoms can be very mild where it just affects your eyes or it could be very severe where you end up in the hospital on a ventilator,” explained MacMullen.

However, perhaps the most debilitating symptom of MG, according to MacMullen, is one that is not visible.

“When you get diagnosed, the biggest thing is that you feel so alone,” said MacMullen. “When I was diagnosed, I’d never heard of my myasthenia and I was a nurse. (My) biggest (goal now) is breaking this isolation (and helping others.)”

Though this disease has no cure to date, the prospect of a new drug called Vyvgart, approved by Health Canada in late 2023, gives hope to MacMullen.

“One of my friends in Ontario is getting that treatment right now so we’re all waiting to see how well it works with her,” she said. “Anything that can give people a better quality of life and allow them to do the things that give them pleasure (I’m all for it.)”

In the meantime, as June approaches, marking Myasthenia Gravis Awareness Month, MacMullen invites residents of the Comox Valley and beyond to a walk she organizes annually.

“(I’m doing this walk) mainly to raise awareness (and) funds,” said MacMullen. “The more awareness we create, the more people know about it. Right now, my whole focus is on improving (people’s) quality of life.”

MacMullen explained that any donations can go a long way.

“(With more funding we) would offer more support to patients and caregivers dealing with myasthenia gravis. It would also allow me to organize more events like online support groups where we have guest speakers and get more information about new upcoming treatments.”

This year’s event will be held at Courtenay’s Woodcote Park and is scheduled for June 23, starting at 10 a.m. Hot dogs and water will be offered at the end of the walk.

Donations are appreciated and can be made on-site. To learn more about myasthenia gravis, visit mgcanada.org

RELATED: Comox Valley woman with rare autoimmune disease is hoping for more conclusive treatment

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Olivier Laurin

About the Author: Olivier Laurin

I’m a bilingual multimedia journalist from Montréal who began my journalistic journey on Vancouver Island with The Comox Valley Record in 2023.
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