Courtenay resident Linda MacMullen was diagnosed with myasthenia gravis (MG) in 2001, after 10 years of symptoms.
The fact that it took health care providers a decade to determine his condition speaks to the rarity of the disease.
MG falls under the umbrella of muscular dystrophy and there is no cure.
According to the National Institute of Neurological Disorders and Stroke website (www.ninds.nih.gov), MG causes weakness of 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, speaking, and swallowing are often (but not always) involved in the disorder. Muscles that control breathing and movement of the neck and limbs can also be affected.
MacMullen says that by lunchtime she is often already tired.
“If I just got my IV treatment, I can walk maybe half a block, and if not, one day 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.”
His days might soon get better.
The recent news of a possible medical treatment makes her dream of a more independent life.
“We’re trying to get provincial approval for a drug that could put me into remission,” she said. “It’s very exciting. It’s an FDA-approved drug – Rituxan (rituximab)… used for cancer. It’s also used for lupus and rheumatoid arthritis.
Although MacMullen has yet to receive a start date for the program, she said it will be life changing.
“When my neurologist told me ‘we will try to put you in remission’, I said ‘After 20 years, is it still possible?’ Now my brain is thinking, “I could do this, I could 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 to try.
The Department of Health has confirmed to Black Press that coverage for rituximab for myasthenia gravis is available, under certain conditions.
• The use of rituximab for myasthenia gravis is off-label and requires special authorization (SA).
• SA provides coverage for a drug, medical supply, or device that would otherwise not be eligible for full coverage.
• All SA requests must be completed by a prescribing physician.
• SA regularly endorses 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/