Rare disease has no known cure

KAPAA — Paula McGinnis doesn’t take a break from raising awareness — even when she’s on vacation.

The Illinois woman was diagnosed with myasthenia gravis, a rare autoimmune neuromuscular disease, in 2006.

“It is almost beyond my imagination that I could have taken an active role of advocacy wherever my journey takes me,” McGinnis said. “Just as my myasthenia never goes on vacation, I take my advocacy with me on vacation to the island of Kauai.”

On Saturday, McGinnis will host the myasthenia gravis walkathon along Ke Ala Hele Makalae path in Kapaa.

She will be joined by Kauai residents and organizers Cynthia Rabina-Houck, Cleo Kanai and Janice Bond.

“With myasthenia just because that person does not look sick, they may deal with fluctuating muscle weakness at any moment during a day,” McGinnis said. “Myasthenia gravis causes weakness of the voluntary muscles that control basic movements, which we often take for granted: walking, talking, smiling, chewing and swallowing, and breathing.”

Before being diagnosed, McGinnis was a nurse who had endless energy and ran several miles each morning.

“My last plan in life was to be slowed down by a rare neurological disease, but I learned that life does not always follow the journey we have planned,” she said.

Now, more than 10 years later, McGinnis dedicates her life to raising awareness of myasthenia gravis.

“I accepted I had MG, and I decided to stay positive and turn my detour in life into a positive journey of advocacy for MG and the Myasthenia Gravis Foundation of America,” she said.

Check-in for Saturday’s walkathon is 8:30 a.m. at Kapaa Beach Park. The event begins at 10 a.m.

The walk is free, but donations are accepted.

Info: www.mgwalk.org/hawaii.

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