Adopted from Korea in the late 1960s, Suzanne Johnson just doesn’t know a lot about the story of her early life.
One thing she does know for sure is that, before she came to the U.S. at age 3, she had measles, and the illness left its mark on her forever. She developed Bell’s Palsy, a rare type of partial facial paralysis that is often temporary.
For Johnson, the paralysis that affects the left side of her face has been permanent, and, according to the minimal medical records she’s been able to access from before her adoption, it was caused by having measles as a toddler.
The condition makes it hard for her to control the left side of her mouth. And her left eye doesn’t close all the way, leading to chronic dryness.
“It feels like there’s a grain of sand in there,” Johnson said.
As a kid, she remembers having a problem with her left eye tearing up all the time.
Johnson, who now lives in Olathe, said she had a hard enough time trying to find her place growing up in a white family in the American South during desegregation. She didn’t feel like she fit in with her family. She didn’t feel like she fit in at school. And on top of that, she said people used to make fun of her facial paralysis.
“This is part of who I am,” she said, noting that she’s accepted it. “If people are going to either make fun of it or criticize it, then they’re not for me.”
These days, stories about lifelong complications from measles illnesses like Johnson’s are rare. A vaccine for measles, mumps and rubella (MMR) has been available for more than a generation now, while measles itself has been considered eliminated in the U.S. for 25 years, which means there hasn’t been a steady 12-month spread of the illness.
But, as vaccination rates slip and more outbreaks crop up across the U.S. each year, public health officials and doctors warn that more cases — and with that, more severe illness with potentially lifelong implications — are likely.
An outbreak that began in a Mennonite community with low vaccination rates in western Texas has spread to neighboring states. Now, there are measles cases documented in nearly 30 states, including Kansas.
As of April 30, the Kansas Department of Health and Environment has confirmed 46 cases of measles spread across eight counties in the state. The majority of those cases were documented in people who are unvaccinated or under-vaccinated, according to the Kansas health department.
While those cases have been concentrated in southwestern and south-central Kansas, public health experts in Johnson County and the metropolitan area all agreed that the probability is high that a case will pop up here.
“I think there’s certainly a risk there, as we’re seeing cases continuing to increase across the country and in Kansas,” said Charlie Hunt, director of the Johnson County Department of Health and Environment. “So it would not surprise me if we have a case here in the Kansas City area.”
Measles infections can be serious
In a series of interviews with the Post, Hunt and some local medical doctors warned that measles infections are serious.
Dr. Megan Loeb, a physician at Leawood Pediatrics, said it’s a misconception that measles is a “non-serious childhood disease.”
Dr. Doug Swanson, an infectious disease physician at Children’s Mercy, also stressed that measles infections are to be taken seriously.
“It’s not just like a simple virus, where you may be uncomfortable for a couple of days,” Swanson said. “They can be quite miserable with the measles infection, and it has some significant complications.”
Though usually marked by a rash and high fevers, measles is a respiratory virus that can lead to seizures, hearing and vision loss, pneumonia, diarrhea, lung damage, brain damage and death. It can also wipe out your immune system’s memory, effectively knocking out any immunity obtained through past infections with other illnesses or vaccinations.
In extremely rare cases, measles can cause a later-in-life complication called subacute sclerosing panencephalitis, which occurs several years after the initial infection and is completely fatal.
Swanson saw a case of that when he was in medical school.
“The child can recover from measles, be perfectly fine, but then they can develop this neurologic degeneration where they start to lose motor skills, and then they start to lose cognitive skills, and it is fatal,” he said.
Plus, because an effective vaccine has made measles extremely rare, a lot of physicians who are working today have never seen a case.
Loeb has been practicing for 20 years. She’s among the generation of doctors who have never encountered a case of measles, but she remembers the stories from the doctors who trained her.
“[They] would tell stories about children and the things that they would see that are now completely preventable,” she said.
Measles is extremely contagious
Additionally, because the illness is so contagious for those who are unvaccinated, containing an outbreak among a population with lower vaccination rates can be much more challenging.
“If it’s in a community, it has the potential for spreading like wildfire,” Loeb said.
According to Mayo Clinic, “90% of people who haven’t had measles or haven’t been vaccinated will become infected” if exposed.
Johnson County doesn’t individually track countywide data for MMR vaccination rates but relies on data stored by the state health department, gathered from school districts reporting their kindergarten immunization rates.
In Johnson County, in the last five school years, the MMR vaccination rate has hovered around 95%, the threshold for community immunity for measles. But, in some school years, that number has slipped below 95%.
Hunt said the epidemiological work that comes with the measles is generally much more intense due to its propensity to spread.
“You have to make sure that you identify everybody that was potentially exposed to make sure that they’ve been vaccinated,” he said.
And, if in that process, if the health department encounters a family in contact tracing that has an unvaccinated child, then they need to keep their child out of child care or school so they don’t spread the illness when they catch it, Hunt said.
Its contagiousness is why Swanson stresses that you can’t bring your kid straight to the urgent care or the emergency room if you think they have measles. The virus can linger in the air for a long time, and the last thing healthcare workers want is someone with a potential case of an extremely infectious disease sitting in a waiting room, exposing others.
He encourages parents to talk to their primary care doctors first or to call a nurse helpline at an area hospital. Or, if nothing else, to call the local health department for help with next steps.
“They can take extra precautions about getting them into their offices in the safest way possible to try to reduce the spread of the disease,” Swanson said.
“I feel like somebody has to speak up”
Johnson, the Olathe woman who had measles as a child and now has partial facial paralysis from it, wants to make sure people understand the risk of getting measles.
“I feel like somebody has to speak up,” she said.
She feels strongly that people should be entitled to make decisions for their own families when it comes to things like vaccinations. However, Johnson wants to be sure everyone makes those choices with information from the best sources available and with all the facts in mind.
One thing she thinks is missing from that conversation is what can happen if your child gets measles, even if they survive it.
“I’m here to say ‘This is what your child could look like,’” she said, gesturing toward the left side of her face. “If you can prevent this, would you want to? I would, as a parent.”
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