B.C. woman with rare autoimmune condition shares expertise in reimagined chapter of Winnie-the-Pooh
Sovay Desmarais, a retired nurse living with the rare autoimmune condition myasthenia gravis, has collaborated on a project to reimagine Winnie-the-Pooh to raise awareness for the disease. The project aims to use the familiar story to explain the daily challenges of living with muscle weakness and fatigue.
Why it matters
Using literature to humanize rare medical conditions helps reduce stigma and improves public understanding of chronic health issues.
Her eye doctor confirmed something was not right — but it wasn't an issue with her eyes. A neurologist diagnosed her with a rare autoimmune condition called myasthenia gravis, or MG, which can lead to muscle weakness, trouble swallowing and even difficulty breathing.
MG affects about 30 out of every 100,000 people in Canada, according to the Myasthenia Gravis Society of Canada. There is no known cure, the society says, but once diagnosed and properly treated, people can live fairly normal lives.
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"I retired from work well before retirement age, so my life is good, but very different than what I imagined it would be," Demaris told CBC's On The Coast .
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