Linda McMullen has been battling with a rare autoimmune disease called myasthenia gravis (MG) for over two decades.
This chronic ailment causes weakness in the skeletal muscles, which are responsible for a wide range of body movements and breathing.
Those suffering from MG become exhausted and feel weaker following periods of activity or after performing everyday tasks.
Among other things, myasthenia gravis can affect various facial muscles, altering a person’s ability to smile, chew, swallow, and control their eye movements.
By noon, MacMullen admits that her energy levels often start to dwindle.
“I make all my appointments first thing in the morning because I know in the afternoon I might have double vision and not be able to drive or my legs might be weak, which would make me a menace on the road,” says MacMullen.
“I know if I have a shower without any assistance, that’s it for today. I can walk to the top of my driveway, but that’s it. I can’t walk to the mailbox.”
Unfortunately, this disease has no cure.
However, the prospect of new drugs on the Canadian market can help temper some of MG’s symptoms. This drug is Rituxan (rituximab) - a molecule used in cancer treatment.
Newly available in Canada, MacMullen started taking rituximab last year. Sadly, the expected results from the medication were not achieved.
“My neurologist thought it would put me into remission, but I’m not so lucky when it comes to that,” adds MacMullen.
Despite not being a success, MacMullen said there were some positive results from the experiment.
“I did notice improvements. It made my other treatment more tolerable,” says MacMullen. “It also gave me my smile somewhat back. I also feel a bit stronger. I noticed I still have to really plan my activities because I still will end up totally wiped out. But at least I feel like I have a bit more of a normal life.”
Despite those disappointing results, MacMullen stays optimistic. As a director of the Myasthenia Gravis Society of Canada, she finds solace in comforting others.
“I feel good. I’m doing a lot of advocacy work for people with myasthenia,” adds MacMullen. “I feel like I’m making a contribution to helping improve other people’s lives.”
The possibility of a new drug being approved by Canadian health authorities may also be a game-changer for MacMullen.
Currently available in most European countries and the U.S. a new drug called Vyvgart offers promising results. MacMullen is confident the new medication will be on the Canadian market in the following years.
In the meantime, MacMullen invites all Comox Valley residents to partake in a walk and to raise funds for research on June 11, as part of MG awareness month,
The event will start at 10 a.m. at Courtenay’s Woodcote Park.
Donations are appreciated and can be made on-site. To learn more about myasthenia gravis, visit mgcanada.org