Don’t let these common misconceptions keep you from getting the best treatments and having the greatest possible quality of life.
by Aviva Patz
When Najia Chafai, 55, of Detoin, Morocco, first learned she had multiple sclerosis in 2014, she recalls saying, “My life is over.” She’d had a friend in France who died shortly after receiving the same diagnosis. And yet, eight years later, Chafai is still very much alive, living with her husband and volunteering for MS organizations.
Personal experience with friends or family members living with MS can lead people to form opinions about the disease — some of them inaccurate. On top of that, MS has an unpredictable clinical course. “You can imagine that someone tries a novel therapeutic approach and their disease gets better, but it might have gotten better anyway,” explains Caroline Whitacre, PhD, retired senior vice president for research at Ohio State University and chair of the National Multiple Sclerosis Society’s Scientific Advisory Committee. “That leads to anecdotal myths.” Whitacre has been around long enough to recall when the Society had a 120-page book called “Therapeutic Claims in MS,” which listed many possible therapeutics for MS, some of which were quite unusual, including bee stings and a grapefruit diet.
Reliable, up-to-date scientific information can help people with MS minimize their symptoms and maximize their quality of life. Read on as the experts dispel some of the most common misconceptions about MS.
MYTH: MS is contagiousTRUTH: It’s not. “There’s lots of evidence from people living in the same household that it doesn’t get transmitted that way,” Whitacre says. One of the reasons for this myth is the relationship of MS with the Epstein-Barr virus (EBV). A 2021 study in JAMA Network Open showed that people who had infectious mononucleosis, which is commonly caused by EBV, as children were nearly twice as likely to develop MS. For people who got mono as teens, the risk was three times higher. “There is some relationship — but there hasn’t been any evidence that’s a direct cause and effect.” Also, Whitacre adds, “A lot of people get mono. That doesn’t mean that they will go on to develop MS — it’s just a higher likelihood.”
MYTH: MS is a young white woman’s diseaseTRUTH: MS does affect more women than men, at a rate of 3-to-1, even 4-to-1 in some populations, according to Mitzi Williams, MD, medical director at Joi Life Wellness MS Center in Atlanta. “But most autoimmune diseases are more prevalent in women,” she adds. What’s false is that it affects fewer people of color. A 2022 study in the journal Neurology that looked at more than 2.6 million adults from the multiethnic community of Kaiser Permanente Southern California found that MS prevalence was “similarly high in white and Black and significantly lower in Hispanic and Asian persons.” It also found that the ratio of women to men with MS was higher among Black individuals with MS than those of white or Hispanic background. “The risk of MS, at least in the US, is possibly 47% higher in Black women,” Williams adds. “These are populations that have been historically underrecognized and underdiagnosed.”
MYTH: You’re going to end up in a wheelchairTRUTH: “Even though people with MS may have difficulty walking, the vast majority do not use wheelchairs,” Williams says. While everyone’s rate of disease progression differs, making it difficult to predict their degree of disability, studies show that 15% of people with MS tend to need walking assistance within a year of diagnosis. And after 45 years with MS, some three-quarters require aid with mobility—but that can be a cane or a walker, Whitacre notes. It’s not necessarily a wheelchair.
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