Someone You Should Know: A voice for those with MS

Sioux Falls woman doing her part to get word out about MS
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Published: Mar. 10, 2021 at 6:59 PM CST
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SIOUX FALLS, S.D. (Dakota News Now) - This week is MS Awareness Week, a time for people to understand the importance of donating to those doing research about multiple sclerosis and trying to find a cure.

“It strikes just when you’re kind of at the peak of your family life. All my kids were three and under.”

60-year-old Karen Johnson has lived about half her life with multiple sclerosis.

“Well, it began in 1992. Kind of a sad time in my life, we had a daughter who passed away when she was 19 months old. She had a severe heart defect when she was born, so we had a struggle, her life was a struggle. And that whole stress situation kind of, I think, jump-started my MS because I was diagnosed about two months after her death. And that’s been almost 30 years ago now. And unfortunately, mine was very fast-moving. I was walking with a cane within seven years and a scooter and then a walker for a couple of years, and then a wheelchair for the last 20,” Karen explains.

Karen also had a newborn and a 3-year-old when she was diagnosed. Karen’s youngest daughter would eventually get Karen more involved as a voice for people with MS. “That daughter is also the daughter who now works for the MS Society and she has done that for about eight years now. And six years ago, she got involved with the Public Policy Conference in Washington, D.C. and she said ‘Mom, South Dakota doesn’t have a district advocate leader, I think you’d be good at doing that,’ and so, I said ‘Well, I guess if they don’t have one, I’m better than nothing.’ So, I started getting involved, going out to Washington, D.C. every year. And meeting up with our congressmen and have had wonderful luck with the South Dakota delegation, they’ve been very supportive of a lot of the MS legislation that’s gone through.”

Karen has an especially deep connection to the disease. Not only does she have it, but her sister also has it and her cousin who passed away had it. Karen also works to spread the word about MS and fundraising efforts.

“The MS Society has raised about $100 million towards research and almost every drug, there’s what, 15, 16 available, almost every one of those started from the research the MS Society began.”

Her doctor says incredible medical strides have been made.

“The disability has significantly decreased since medications are available, which we have now a significant number of medications, close to 20, and many more on the pipeline that has helped not only decrease the number of relapses a patient might have but also disease progression,” says Sanford Neurologist Dr. Fanny Jaquez.

But, Karen says what she needs is a cure.

“And that of course is what’s close to my heart. A drug is not available to me unfortunately because I’m progressive and I’m past where there’s a drug that can help. But, most people, I would say the majority of people who have MS are ambulatory, and walking around, you probably wouldn’t even guess that they have MS. And I’m very glad that that is the case, that there are 15, 16 new types of drugs to help newly diagnosed patients. And so they’ve come a long way in the last 15 years.”

She has this message for others: “Go to the National MS Society and donate and help increase the funding for research so that we can find a cure for this devastating disease.”

Click here to learn more.

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