Courtenay resident Linda MacMullen was diagnosed with myasthenia gravis (MG) in 2001, after 10 years of showing symptoms.
The fact that it took health care providers a decade to determine her condition is a testament to the rarity of the disease.
MG falls under the muscular dystrophy umbrella and there is no cure.
According to the National Institute of Neurological Disorders and Stroke website (www.ninds.nih.gov), MG causes weakness in the skeletal muscles, which are responsible for breathing and moving parts of the body, including the arms and legs.
The hallmark of myasthenia gravis is muscle weakness that worsens after periods of activity and improves after periods of rest. 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.
MacMullen says by lunchtime, she is often already tiring.
“If I have just had my IV treatment, I can walk maybe half a block, and if I haven’t, somedays, I can’t walk to the top of my driveway,” she said. “I never know in the morning when I get up, what kind of day it’s going to be.”
Her days may soon be getting better.
The recent news of a possible medical treatment has her dreaming of a more independent life for herself.
“We are trying to get the province to approve a medication that might put me into remission,” she said. “It’s very exciting. It’s an FDA-approved drug - Rituxan (rituximab)… used for cancer. It’s used for lupus and rheumatoid arthritis as well.”
While MacMullen has not been given a start date yet for the program, she said it would be life-changing for her.
“When my neurologist said ‘we are going to try to get you into remission,’ I said ‘After 20 years, is that even possible?’ Now my brain is going, ‘I’ll be able to do this, I’ll be able to do that.’
“My family doctor was quick to point out that hopefully it would do that (result in remission), but it might not. But I wouldn’t hesitate in trying.”
The Ministry of Health confirmed to Black Press that coverage of rituximab for myasthenia gravis is available, under certain conditions.
• The use of rituximab for myasthenia gravis is off-label and requires Special Authority (SA).
• SA grants coverage to a drug, medical supply or device that otherwise would not be eligible for full coverage.
• All SA requests must be completed by a medical prescriber.
• SA routinely approves rituximab for the treatment of MG.
• Requests are reviewed on a case-by-case basis.
June is Myasthenia Gravis Awareness Month. To learn more about MG, visit mgdisease.ca/