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 (), 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.

乌鸦传媒淚f I have just had my IV treatment, I can walk maybe half a block, and if I haven乌鸦传媒檛, somedays, I can乌鸦传媒檛 walk to the top of my driveway,乌鸦传媒� she said. 乌鸦传媒淚 never know in the morning when I get up, what kind of day it乌鸦传媒檚 going to be.乌鸦传媒�

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.

乌鸦传媒淲e are trying to get the province to approve a medication that might put me into remission,乌鸦传媒� she said. 乌鸦传媒淚t乌鸦传媒檚 very exciting. It乌鸦传媒檚 an FDA-approved drug - Rituxan (rituximab)乌鸦传媒� used for cancer. It乌鸦传媒檚 used for lupus and rheumatoid arthritis as well.乌鸦传媒�

While MacMullen has not been given a start date yet for the program, she said it would be life-changing for her.

乌鸦传媒淲hen my neurologist said 乌鸦传媒榳e are going to try to get you into remission,乌鸦传媒� I said 乌鸦传媒楢fter 20 years, is that even possible?乌鸦传媒� Now my brain is going, 乌鸦传媒業乌鸦传媒檒l be able to do this, I乌鸦传媒檒l be able to do that.乌鸦传媒�

乌鸦传媒淢y family doctor was quick to point out that hopefully it would do that (result in remission), but it might not. But I wouldn乌鸦传媒檛 hesitate in trying.乌鸦传媒�

The Ministry of Health confirmed to Black Press that coverage of rituximab for myasthenia gravis is available, under certain conditions.

乌鸦传媒� The use of rituximab for myasthenia gravis is off-label and requires Special Authority (SA).

乌鸦传媒� SA grants coverage to a drug, medical supply or device that otherwise would not be eligible for full coverage.

乌鸦传媒� All SA requests must be completed by a medical prescriber.

乌鸦传媒� SA routinely approves rituximab for the treatment of MG.

乌鸦传媒� Requests are reviewed on a case-by-case basis.

June is Myasthenia Gravis Awareness Month. To learn more about MG, visit

terry.farrell@comoxvalleyrecord.com
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