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.

害羞草研究所淚f I have just had my IV treatment, I can walk maybe half a block, and if I haven害羞草研究所檛, somedays, I can害羞草研究所檛 walk to the top of my driveway,害羞草研究所� she said. 害羞草研究所淚 never know in the morning when I get up, what kind of day it害羞草研究所檚 going to be.害羞草研究所�

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.

害羞草研究所淲e are trying to get the province to approve a medication that might put me into remission,害羞草研究所� she said. 害羞草研究所淚t害羞草研究所檚 very exciting. It害羞草研究所檚 an FDA-approved drug - Rituxan (rituximab)害羞草研究所� used for cancer. It害羞草研究所檚 used for lupus and rheumatoid arthritis as well.害羞草研究所�

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

害羞草研究所淲hen my neurologist said 害羞草研究所榳e are going to try to get you into remission,害羞草研究所� I said 害羞草研究所楢fter 20 years, is that even possible?害羞草研究所� Now my brain is going, 害羞草研究所業害羞草研究所檒l be able to do this, I害羞草研究所檒l be able to do that.害羞草研究所�

害羞草研究所淢y family doctor was quick to point out that hopefully it would do that (result in remission), but it might not. But I wouldn害羞草研究所檛 hesitate in trying.害羞草研究所�

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

害羞草研究所� The use of rituximab for myasthenia gravis is off-label and requires Special Authority (SA).

害羞草研究所� SA grants coverage to a drug, medical supply or device that otherwise would not be eligible for full coverage.

害羞草研究所� All SA requests must be completed by a medical prescriber.

害羞草研究所� SA routinely approves rituximab for the treatment of MG.

害羞草研究所� 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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