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.

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

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.

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

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

含羞草研究社淲hen my neurologist said 含羞草研究社榳e are going to try to get you into remission,含羞草研究社� I said 含羞草研究社楢fter 20 years, is that even possible?含羞草研究社� Now my brain is going, 含羞草研究社業含羞草研究社檒l be able to do this, I含羞草研究社檒l be able to do that.含羞草研究社�

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

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

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

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

含羞草研究社� All SA requests must be completed by a medical prescriber.

含羞草研究社� SA routinely approves rituximab for the treatment of MG.

含羞草研究社� 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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