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Woman living with multiple sclerosis supports, advocates for other patients through educational workshops

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Posted at 5:01 PM, Sep 10, 2022
and last updated 2022-09-10 20:11:10-04

KANSAS CITY, Mo. — A woman living with multiple sclerosis is holding a series of workshops in the Kansas City area to teach other patients how to self-advocate throughout their journeys.

After seven years of living in the unknown, Keyonna Pitchford was finally diagnosed with MS in 2017.

Her own struggles with self-advocacy and self-discovery were anything but easy.

“It still makes me quite emotional because I feel like I’m still figuring things out, but I’m a lot stronger than I was back in 2017,” Pitchford said. “Being very secretive about what it was that I was going through and being a single woman living alone, that can be very scary when you’re going through something as life-altering.”

She remembers the struggles of living with relapsing-remitting MS, a neurological disease that affects the central nervous system. Depending on how many lesions one has and where they're located in the brain will dictate the kind of challenges one may face.

Some of Pitchford's symptoms included extreme vertigo, muscle spasms, brain fog, memory loss, general weakness and hyperreflexia.

“So at one point I was using a cane and a walker and crawling," she said. "I suffered atrophy in my extremities and things like that, so after the relapse was over, I worked on my physical fitness."

Even with more research and funding reforms for medications, there is still no known cure for MS, which is why Pitchford created a platform called Rise Well to teach, guide and support other patients in her shoes.

“I had to pull and find and dig for information, so I’m hoping that by making this free and available to people that they will actually say yes to themselves and allow themselves to be cared for,” Pitchford said.

In partnership with the Kansas City Public Library, she decided to host a series of five free workshops from now until July 2023. She will use the opportunity to teach patients how to ask for what they need while showing their loved ones how to be there for someone with MS.

“I’m literally being the thing that I wish that existed a decade ago when I was going through my journey,” she said. “The research is always going to be done, but I wish there were more resources that helped people that live their everyday lives.”

Pitchford says there is power in having open conversations. She hopes people who come to her workshops will hear truth, find resources and learn to accept love.

“I honestly wouldn’t change it. Having this diagnosis has been a gift,” Pitchford said. “I’m hoping that people bring out their families and loved ones and open this up for conversation.”

Pitchford’s aunt, Yoland Pitchford, was in the audience at the first workshop on Saturday.

“Reaching out and just saying, 'What can I do for you?' Not to be overbearing, allowing her to have her moments, right?” Yolanda Pitchford said.

For information on upcoming workshops, click here.