Linda MacMullen is one of the very few Comox Valley residents to be diagnosed with myasthenia gravis. She is hosting a walk around Courtenay Airpark on Sunday, June 16, to raise funds for research. Photo by Terry Farrell.

Comox Valley woman battling rare autoimmune disease

Linda MacMullen a voice for those with myasthenia gravis

Myasthenia gravis is so difficult to diagnose, Linda MacMullen isn’t even sure how long she has had the autoimmune disease.

“I was diagnosed in 2001, but I know I had it for at least 10 years before I was diagnosed, and my mom was sure I’ve had it all my life,” said the Courtenay resident.

Myasthenia gravis (MG) is a rare neuromuscular/autoimmune disease that affects an estimated 30,000 Canadians.

The disease 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. The muscles that control breathing, and neck and limb movements may also be affected.

“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.”

For years, doctors were baffled with MacMullen’s condition. A chance appointment with a local ophthalmologist changed that.

“My regular ophthalmologist was on holidays so I saw the ophthalmologist who was filling in for mine – Dr. Shaver – and within five minutes he said, ‘I think you have this.’

“So he did the blood work, and of course I came back negative – I don’t do things the easy way. So they sent me over to Vancouver, and a neuro-ophthalmologist got super excited when he saw my eyes and said that yes, I did have it.”

Treatment of MG varies from patient to patient. For MacMullen, treatment involves three consecutive days of immune globulin intravenous (IGIV) every three weeks.

“It’s four hours each day for three days in a row. I repeat that every three weeks,” she explained.

June is Myasthenia Gravis Awareness Month. The Comox Valley MG Walk 2019, to raise funds for the Myasthenia Gravis Society of Canada, takes place Sunday at 10 a.m. at the Airpark in Courtenay.

Registration is at 9:30, next to the kayak rental location (corner of 20 Street and Cliffe Avenue).

MacMullen said there were some positives that came out of the media exposure surrounding last year’s inaugural walk, which attracted 20 participants.

RELATED: Comox Valley resident bringing awareness to MG

“In a lot of ways, that first walk was very successful,” she said. “From personal experience, from ending up in the emergency room at the hospital, I actually had doctors who knew what the heck myasthenia was. That’s always been one of the big problems.”

MacMullen said since the walk last year, she has met more people that have MG, and she is hopeful of their presence at this year’s walk.

“Since last year’s walk, I know of at least two other people that have it, and there are probably a lot more that have the symptoms but just don’t know what it is,” she said.

Donations will be collected at the walk itself. There will also be coffee mugs, shirts, ball caps, lapel pins and bracelets available for purchase at the event. All funds raised will go to the Myasthenia Gravis Society of Canada, for research.

For those who would like to donate prior to the walk, MacMullen has set up a website:

For more information, visit the Facebook page: Canada’s MG Walk, or contact MacMullen, at 250-338-4542.

Like us on Facebook and follow us on Twitter

Just Posted

Aid a priority for idled Vancouver Island loggers, John Horgan says

Steelworkers, Western Forest Products returning to mediation

McKinnon joins Habitat for Humanity Vancouver Island North team

Karen McKinnon has joined Habitat for Humanity Vancouver Island North (Habitat VIN)… Continue reading

Everybody Deserves a Smile’s 2019 campaign coming to fruition

The 2019 Everybody Deserves a Smile campaign is reaching its crescendo. Thursday… Continue reading

Filling the need for growing senior home care in the Comox Valley

Tracie Robertson and Melissa King recently opened Home Instead Senior Care

Cumberland expects draft plan for Bevan Road in 2020

Site contains more than 80 per cent of potential industrial land in Comox Valley

VIDEO: More air-passenger rights go into effect this weekend

The first set of passenger rights arrived in mid-July in Canada

Comox Valley RCMP issue arrest warrant for local man

Comox Valley RCMP warrant of the week

Swoop airlines adds three destinations in 2020 – Victoria, Kamloops, San Diego

Low-fair subsidiary of WestJet Airlines brings new destinations in April 2020

Navigating ‘fever phobia’: B.C. doctor gives tips on when a sick kid should get to the ER

Any temperature above 38 C is considered a fever, but not all cases warrant a trip to the hospital

Transportation Safety Board finishes work at B.C. plane crash site, investigation continues

Transport Canada provides information bulletin, family of victim releases statement

Trudeau sets 2025 deadline to remove B.C. fish farms

Foes heartened by plan to transition aquaculture found in Fisheries minister mandate letter

Wagon wheels can now be any size! B.C. community scraps 52 obsolete bylaws

They include an old bylaw regulating public morals

Indigenous mother wins $20,000 racial discrimination case against Vancouver police

Vancouver Police Board ordered to pay $20,000 and create Indigenous-sensitivity training

Sentencing for B.C. father who murdered two young daughters starts Monday

The bodies of Aubrey, 4, and Chloe, 6, were found in Oak Bay father’s apartment Dec. 25, 2017

Most Read