Linda MacMullen shows some of the facemasks she has been making for hospital employees and patients, while under isolation. MacMullen has myasthenia gravis, which puts her in the “high-risk” category for COVID-19. Photo submitted

Vancouver Island woman with myasthenia gravis says exposure to COVID-19 could be ‘a death sentence’

June is Myasthenia Gravis Awareness Month

Most people will say that the rules associated with flattening the COVID-19 curve have been an imposition.

For some, the rules are life-saving.

Linda MacMullen falls into the latter category.

“For me, the virus could very well be a death sentence,” she said.

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MacMullen has been living with myasthenia gravis for two decades.

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 biggest fear I have of COVID-19 is if I should catch it, because I have a chronic condition, would I qualify to be put on a ventilator if things should get bad? So it’s really very, very scary.”

MacMullen is grateful to be living on Vancouver Island, where the spread of the disease has been so well contained.

She said she was given instruction by her family doctor at the outset.

“I got phone calls frequently from my doctor’s office, telling me what I had to do. Basically, I am stuck at home, except for going to the hospital for my IV treatments – three days every three weeks.”

MacMullen’s contact with others has been limited to her hospital visits, as well as her two caregivers, and one friend, who checks in on her regularly.

“Other than that, it’s on the phone, or on the computer. This forced isolation sucks, but you have to do it,” she says. “My social circle has been totally decimated.”

Not one to wallow in her own situation, MacMullen has been spending her isolation time making masks for others.

“I have been donating them to the hospital for use there,” she said. “So far I have made 82 masks.”

One aspect of the pandemic that has been a blessing in disguise for MacMullen is the discovery of the Zoom app, which allows for multi-person teleconferencing.

“Every Tuesday our MG support group has a Zoom meeting, and I also have a friend who teaches yoga, so on Fridays I have been hosting Zoom yoga for myasthenia people.

“Zoom has really expanded my contact with the myasthenia community a lot.”

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

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

“It can be really difficult to diagnose,” said MacMullen. “People can get the blood test, it can come back ‘negative,’ but that doesn’t mean they don’t have it. They [medical community] still don’t know all the antibodies that are responsible. They are finding more antibodies all the time.

“I have heard that there is another suspected case in the Comox Valley. They are going through the testing, but with COVID… they aren’t doing a lot of the tests right now.”

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.

“And and my mom was sure I’ve had it all my life,” she said.

As previously mentioned, one of the procedures MacMullen needs is the regular IV treatment. Even that has been adversely affected by the pandemic.

“We might be running into a problem, because it’s a blood product,” she said. “Blood donations are getting low and they may experience a shortage. So people still need to donate when they can. We are counting on it. I don’t know how I would function at all without my IV treatments.”

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

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