What people living with multiple sclerosis need to know about coronavirus — according to experts and patients

Heather Millen (pictured with her children) explains what it's like living with MS during a coronavirus outbreak. (Photo courtesy of Heather Millen)
Heather Millen (pictured with her children) explains what it's like living with MS during a coronavirus outbreak. (Photo courtesy of Heather Millen)

March is Multiple Sclerosis Awareness Month. Read more personal stories about people living with the autoimmune disease on Yahoo Lifestyle.

The World Health Organization has declared coronavirus a global pandemic and fears of the virus continue to grow in the U.S. Currently, there are more than 1,200 confirmed cases of coronavirus, aka COVID-19, in America, according to data from Johns Hopkins. Less than a month ago, there were none.

Health officials have repeatedly stressed to the general public as an apparent form of reassurance that most cases of COVID-19 are mild, and that more severe cases are largely in people with underlying health conditions or who are immunocompromised. People with multiple sclerosis (MS) fall into that category—and there are nearly 1 million of them in the U.S.

Multiple sclerosis is a chronic and usually progressive autoimmune disease that damages the sheaths of the nerve cells in a person’s brain and spinal cord, according to the National Multiple Sclerosis Society. People with MS can have symptoms that include difficulty with balance, trouble walking, involuntary muscle spasms, fatigue, numbness and tingling, weakness, pain, cognitive changes and bladder and bowel issues.

“Any time people with MS get any kind of infection, it can be a trigger for their symptoms and make them worse,”Amesh A. Adalja, MD, infectious disease expert and senior scholar at the Johns Hopkins Center for Health Security, tells Yahoo Lifestyle. “Many are on immune-suppressing medications that will make them more likely to get a severe course of illness. So, if they do get infected, it could be severe.”

“It’s all the more important for people who are immunocompromised to take precautions,” says William Schaffner, MD, an infectious disease specialist and professor at the Vanderbilt University School of Medicine. “If anybody should take coronavirus seriously, it’s this group.”

MS patients feel like they’re being easily dismissed.

“The other day, I watched the mayor of New York saying, as a calming tool, ‘Remember, if you’re not that small percent that’s considered high risk, you’re fine,’” Heather Millen, a 42-year-old mother of two living in Brooklyn, tells Yahoo Lifestyle. “I feel like people with MS and other people who are high risk are constantly being dismissed. What about those people?”

The issue hits especially close to home for Millen, whose sister Denise died in 2009 from H1N1, aka the “swine flu.” Millen’s sister also had an autoimmune condition. “Over the course of three weeks, I watched her body shut down,” Millen recalls. Now, coronavirus is taking her back to that time. “I feel like coronavirus is being so underplayed,” she says.

Heather Millen and her late sister, Denise. (Photo courtesy of Heather Millen)
Heather Millen and her late sister, Denise, who died in 2009 from the "swine flu" and also had an autoimmune disease. (Photo courtesy of Heather Millen)

Fellow New Yorker and MS patient Victor Espinal works at a hospital in New York City. “We have patients with coronavirus,” says Espinal. “One thing I can say is that it doesn’t discriminate. It doesn’t matter what’s your race or age, we should all take care.”

Espinal points out that someone can carry the virus for up to two weeks before they exhibit symptoms, which is concerning for him and others. “A person can be traveling around, looking all healthy while giving others the virus without knowing,” he explains. “This is why it is very contagious and needs to be taken seriously.”

The National Multiple Sclerosis Society recently issued guidelines for MS patients about coronavirus.

Under the guidelines, the National Multiple Sclerosis Society stresses that MS patients should follow the Center for Disease Control and Prevention’s principles for the general population on preventing coronavirus, as well as additional recommendations for at-risk populations. Those additional recommendations include the following:

  • Stock up on supplies.

  • Take everyday precautions to keep space between yourself and others.

  • When you go out in public, keep away from others who are sick, limit close contact, and wash your hands often.

  • Avoid crowds as much as possible.

  • Avoid cruises and non-essential air travel.

  • During a COVID-19 outbreak in your community, stay home as much as possible to further reduce your risk of being exposed.

The National Multiple Sclerosis Society also advises patients to continue taking disease-modifying therapies and to discuss potential risks of stopping the drug with their practitioner if they want to go off of it.

Julie Fiol, the director of MS Information and Resources at the National Multiple Sclerosis Society, tells Yahoo Lifestyle that the organization makes similar recommendations about the flu. “The risk of contracting such a virus is no different than it was in previous years, and people with MS on these [disease-modifying] therapies have developed excellent strategies to mitigate their chances of catching common viruses,” she says. “For the general American public, who are unlikely to be exposed to this virus at this time, the immediate health risk from COVID-19 is considered low, which may help lesson some of the anxiety around this virus.”

MS patients are working hard to avoid coronavirus.

Espinal says he’s taking extra precautions to keep himself and family safe. “Before I carry or touch my loved ones back home, I make sure I remove my uniform first and wash my hands,” he says.

Millen says she tends to get “every cold and flu that comes around,” and that’s concerning to her. However, she works remotely, and she says she and her family are doing their best to stay home. Her 4-year-old was about to start a nursery school, and Millen decided to keep him home instead. “It didn’t feel like a necessary risk,” she says. “Right now, I’d prefer to take that one step and keep him with me.”

Ultimately, Millen wants people with autoimmune conditions and underlying health conditions “to be seen.” “Those people that are being discounted by every news program and government official, they’re people. What about those people?”

For the latest news on the evolving coronavirus outbreak, follow along here. According to experts, people over 60 and those who are immunocompromised continue to be the most at risk. If you have questions, please reference the CDC and WHO’s resource guides.