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 personB次元官网网址檚 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.
B次元官网网址淪ymptoms 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,B次元官网网址� explained MacMullen.
However, perhaps the most debilitating symptom of MG, according to MacMullen, is one that is not visible.
B次元官网网址淲hen you get diagnosed, the biggest thing is that you feel so alone,B次元官网网址� said MacMullen. B次元官网网址淲hen I was diagnosed, IB次元官网网址檇 never heard of my myasthenia and I was a nurse. (My) biggest (goal now) is breaking this isolation (and helping others.)B次元官网网址�
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.
B次元官网网址淥ne of my friends in Ontario is getting that treatment right now so weB次元官网网址檙e all waiting to see how well it works with her,B次元官网网址� she said. B次元官网网址淎nything that can give people a better quality of life and allow them to do the things that give them pleasure (IB次元官网网址檓 all for it.)B次元官网网址�
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.
B次元官网网址�(IB次元官网网址檓 doing this walk) mainly to raise awareness (and) funds,B次元官网网址� said MacMullen. B次元官网网址淭he more awareness we create, the more people know about it. Right now, my whole focus is on improving (peopleB次元官网网址檚) quality of life.B次元官网网址�
MacMullen explained that any donations can go a long way.
B次元官网网址�(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.B次元官网网址�
This yearB次元官网网址檚 event will be held at CourtenayB次元官网网址檚 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
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