Linda MacMullen (seen here with her dog, Natasha) was diagnosed with myasthenia gravis in 2001. Since then, she has put considerable effort into raising awareness of the rare condition. Photo by Terry Farrell

Linda MacMullen (seen here with her dog, Natasha) was diagnosed with myasthenia gravis in 2001. Since then, she has put considerable effort into raising awareness of the rare condition. Photo by Terry Farrell

Comox Valley woman with myasthenia gravis says the condition is often misdiagnosed

June is Myasthenia Gravis Awareness Month

Linda MacMullen was very nearly put on a ventilator this winter, but it had nothing to do with COVID.

It was a myasthenia crisis.

“They were threatening several times that they may have to put a breathing tube down, but thankfully that didn’t happen,” she said.

While this was MacMullen’s first such episode in the 20 years since her myasthenia gravis diagnosis, she understands it is a possible consequence of the condition.

“Now I have to use a non-invasive ventilator at night. That’s permanent,” she said.

Myasthenia gravis (MG) is a rare neuromuscular/autoimmune disease that causes weakness in the skeletal muscles responsible for breathing and moving parts of the body, including the arms and legs.

Certain muscles, such as those that control eye and eyelid movement, facial expression, chewing, talking, and swallowing are often (but not always) involved in the disorder.

As an immuno-compromised individual, MacMullen must take extreme caution. The pandemic has drastically restricted her day-to-day life.

“Mostly I have been staying at home, but I have started a couple of support groups that meet on Zoom a couple of days a week, which really helps,” she said.

June is Myasthenia Gravis Awareness Month.

Myasthenia gravis is a relatively rare disease. An estimated 30,000 Canadians have MG, which means the local MG community is quite small.

MacMullen knows first-hand how difficult the diagnosis can be. Although she was diagnosed with MG in 2001, she is certain she had it for at least 10 years prior to her diagnosis.

The condition is so rare, it’s often misdiagnosed by those in the health care industry, including paramedics.

“When they tend to somebody with myasthenia, they put that little probe on your finger, and they say the oxygen saturation is fine, so it must be a panic attack,” said MacMullen. “But it’s not the moving of oxygen that’s the issue. It’s the weakness of the muscles… we can’t get the oxygen in and out, so our oxygen saturation does not drop until we just about stop breathing. That’s one of the biggest fears – that people will think it’s a panic attack. It’s not.”

MacMullen added she has never experienced this misdiagnosis locally, but it is a common occurrence among others in her nationwide support group.

“I hear of it all the time in my support group,” she said. “In one instance, when the lady got to the emergency ward a very short time later, they had to put her on a ventilator.”

To MacMullen’s knowledge, there are only eight people in the Comox Valley with MG.

Last year at this time, MacMullen only knew of four, and she attributes the increase in diagnoses, in part, to the awareness campaigns she has spearheaded locally for the past several years.

“I am sure they have helped,” she said. “I like to think (my work) has helped.”

MacMullen is hopeful the City of Courtenay will issue a proclamation recognizing that June is Myasthenia Awareness Month.

“The province has one… it just makes more people aware; just getting the word out, that there are people out there, in our own community, with this condition.”

Courtenay Mayor Bob Wells confirmed to The Record that the city will be issuing a proclamation recognizing June as Myasthenia Awareness Month.

MacMullen has set up a fundraising page, to help raise money for MG research and education. To support her fundraiser, visit https://bit.ly/34HkkOt

One of the procedures MacMullen needs is a regular IV treatment. Her treatments, which involve a blood plasma product, occur for three consecutive days, every three weeks.

“We’ve been told that there is a shortage, because it’s a blood product,” she said. “It’s made from the plasma but it takes a lot of donors to make one vial of this product. So the more people that donate, the better it is for anybody who relies on blood transfusions or any of the blood products.”

The next scheduled blood donor clinics in the Comox Valley are Aug. 10-12 at the Florence Filberg Centre (411 Anderton Ave.) in Courtenay.

Book an appointment by calling 1-888-2-DONATE (1-888-236-6283), at blood.ca or through the GiveBlood app.

June is Myasthenia Gravis Awareness Month. For more information on the disease, visit the Myasthenia Gravis Society of Canada website at www.mgcanada.org

ALSO: June is Brain Injury Awareness Month


terry.farrell@blackpress.ca
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