On the 20th anniversary of her myasthenia gravis diagnosis, Nadine decided it was time to come out of the shadows.
For 20 years she had struggled with MG – not just the symptoms like weakness and trouble breathing but also the psychological toll of living with a rare, invisible disease.
The looks when she emerged from her car parked in a handicapped spot (“where’s your wheelchair?”). The confusion from family and friends (“you look fine”). The fear of entering the hospital emergency department (“I’ve never seen myasthenia before”).
“Sometimes your disability is invisible. There is so much stigma around that,” Nadine says. “I want to shine a light on MG for others who may be experiencing the same things.”
In 2020, Nadine decided to host a local walk for MG awareness. It was a private event for family and friends, so she was surprised when 30 people joined to walk. Seeing the support galvanized her to create a nonprofit based in her town of Halifax, Nova Scotia, in Canada.
The nonprofit, Single Snowflake, hosts an annual MG awareness walk and has hosted two fundraiser concerts. Funds support local education initiatives and opportunities to raise further awareness.
“Before I got diagnosed, it was a struggle with symptoms,” Nadine says. “MG shattered my dreams of becoming a professional boxer and profoundly affected my family and relationships as well. The education at that time for patients and their families was almost zero.”
Making a difference for others who may feel lost, scared, or alone is a big reason why Nadine has decided to be more open about having myasthenia gravis and why Single Snowflake hosts their MG awareness walk.
“My goal is to spread awareness. We hope a lot of people attend this year’s walk so we can show support for people living with MG.”
*In the Halifax area? Join Single Snowflake on June 28 for their 4th Annual MG Awareness Walk. Reach out via their Instagram page or at Singlesnowflake.mg902@gmail.com for more details!
