A Toronto woman is helping add a new chapter to a famous children’s book in order to educate people on a disease that impacts 30 out of every 100,000 Canadians.
Seren Zevker lives with the rare condition known as myasthenia gravis (MG), a chronic neuromuscular disease.
Symptoms include droopy eyes and mouth, as well as difficulty talking, swallowing, walking or standing. They can also manifest as fatigue, blurred or double vision, trouble breathing, and weakness in the arms and legs.
Zevker told CTV’s Your Morning on Tuesday that one of the main symptoms of the condition is that is slows the muscles.
“It causes weakness, which is something that we experience if we are doing a task over time,” she said. “And then we have to rest and then the muscle catches up and (goes) back to normal.”
To help raise awareness on the disease, Muscular Dystrophy Canada and pharmaceutical company UCB Canada created a new chapter of Winnie-the-Pooh, which has a connection to MG.
A.A. Milne, the book’s author, had a son named Christopher Robin Milne - the inspiration behind the character of Christopher Robin - who lived with MG in real life.
Zevker shared her experiences of living with the disease to help inform the reimagined chapter of the beloved book, which is celebrating its 100th anniversary.
She said by using this familiar character, who spends time running around and climbing trees like many children do, it clearly illustrates what people who have the condition live with.
“It helps put the symptoms directly into the book and tell the story behind it,” she said. “People empathize a lot more than telling just the symptoms of a condition like this.”
Zevker, who is 32, has lived with her diagnosis since she was 19. These days, she said her life is going well and that she’s in “stable condition,” thanks to listening to her body and taking her medications. However, she hopes to reach Canadians who might be new to the condition and are looking for guidance.
“There are people who are out there still trying to also get a diagnosis or trying to settle their lifestyle with the proper medication and the proper treatments,” she said.
