Myasthenia Gravis patient wants change in her lifetime

Published: Jun. 20, 2022 at 2:28 PM PDT
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RENO, Nev. (KOLO) - At age 12 Rachel Blinn was diagnosed with Myasthenia Gravis. Then and now it is a rare disease with children.

She said she and her family knew something was wrong the day Rachel performed in a school play.

“About half-way through the performance my body stopped, and I hit the ground,” says Blinn. “And I was trying to move. but all I could do was flop around like a fish,” she says. The disease occurs when for unknown reasons, messages from the nerve to the muscle short circuit.

Patients experience muscle fatigue. They can rest, and mobility will come back. But it lasts only a short time.

Rachel went into remission after treatment at age 12. She went back to school, graduated from high school, and eventually got her master’s degree in social work. The disease stayed away for the most part. She rarely shared her experiences with MG and just assumed she would continue to live a normal life.

Then came COVID.

Despite being vaccinated she ended up in the hospital in December 2021.

“The doctors jumped on it right away,” says Blinn. “They put me in the hospital and put me on plasmapheresis. So, I got out of there without a feeding tube and intubation,” she says.

Blinn is convinced she wouldn’t be here if she had not received the COVID vaccine.

However, the virus brought her disease back to the forefront. She gets around in a wheelchair and receives IV treatment two-times a week 2 times a month at home. Rachel has trouble lifting her head, breathing can become labored, she needs help bathing.

What surprises her is not much has changed since she was 12.

“Here I am today, realizing they have the exact same medication,” Blinn says compared to her experience at age 12. “They are no closer to a cure. They don’t know much about it,” she says.

Determined to bring more awareness to Myasthenia Gravis, she asked the governor to officially designate this month to recognize the disease.

She got that.

Later in the year there will be a walk to raise money for the Myasthenia Gravis. She says she will be there.

That’s because she is no longer 12 years old.

Blinn says, “I am realizing if you don’t advocate, if you don’t talk about it, built awareness, and there’s not funding and research involved, then things don’t change.”

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