Connie Ingram’s son, Jackson, went to bed one night after experiencing severe nausea, vomiting, and fever. When the then-19-year-old college student awoke the next day, he was disoriented and unresponsive.
“I still have flashbacks to him kind of looking around with blank eyes, reaching for something next to the bed like he was trying to find something,” recalls Ingram, who lives in Highland Ranch, CO. She called for an ambulance, and watching the EMTs treat her son “was so surreal,” she says. “I was so focused on his face, hoping he was going to respond to them.”
It turned out that Jackson had bacterial meningitis, a condition in which the meninges, the protective membranes that surround the brain and spinal cord, become inflamed. After time in the intensive care unit and occupational and physical therapies, Jackson was able to walk on his own again, albeit with some pain and weakness that abated over time.
His cognitive recovery took longer, though, as his reading comprehension and memory suffered, Ingram says. Jackson had to take his first-semester final exams in the spring rather than December but had recovered enough by then to stay on track academically. He graduated from college with honors, scored high on his LSATs, and “killed the law boards,” Ingram says. While he overcame many of his cognitive issues, the photographic memory he had in childhood never came back.
Both bacteria and viruses can cause meningitis. Patients with viral meningitis can experience memory loss, lack of concentration, and issues with thinking or problem-solving. A 2024 study published in Frontiers in Neurology found that within two years of having viral meningitis, 67 percent of patients continued to have persistent signs and symptoms of the disease, with 36 percent experiencing subjective cognitive impairment.
Bacterial meningitis, though, is “the really dangerous form,” says Matthijs Brouwer, MD, PhD, professor of neurology at Amsterdam UMC in the Netherlands. About 1 in 6 patients die, and it can cause severe inflammation of the brain and swelling within the skull. Roughly 10 to 20 percent of patients with bacterial meningitis have a stroke and subsequent speech and movement problems, he says.
Several kinds of bacteria can cause meningitis, including meningococcus, listeria, and pneumococcus, according to the U.S. Centers for Disease Control and Prevention (CDC). Young adults who live in close quarters like college dormitories and residents of military barracks in particular are at risk for the meningococcal form of bacterial meningitis.
Clinicians typically treat bacterial meningitis with intravenous antibiotics along with a corticosteroid to help reduce inflammation while they determine which type of the disease the patient has, since early recognition and treatment are key for recovery. About 30 to 40 percent of survivors end up with neurologic complications, such as hearing loss resulting from nerve damage, trouble concentrating, sensitivity to sound or bright lights, and headaches. Recovery can take time—or not happen at all.
“Any time there’s an infection of the central nervous system and the brain, there can be both short-term and longer-term risks to cognitive health,” says Thomas Murray, MD, PhD, professor of pediatrics at Yale School of Medicine and an infectious disease specialist. “Certainly in the short term, people can present with changes in their mental status, they may not be aware of their surroundings as well, [and] they may not recognize people.”
Two vaccines, however, offer hope in the form of protection against certain types of meningococcus. One vaccine targets four of the six major serogroups (bacteria with a common antigen) associated with bacterial meningitis—A, C, W, and Y—while the other vaccine targets just serogroup B. (The sixth serogroup is known by the letter X.)
Vaccination can help others avoid what Andy Marso experienced after contracting the disease in April 2004 as a 22-year-old senior at the University of Kansas. He had flu-like symptoms at first, but other troubles soon followed.
“I noticed that my feet hurt, and I had this weird, prickly, pins-and-needles pain in my feet, like when your foot goes to sleep and you try and walk on it,” recalls Marso, who now lives in Lakeville, MN. He developed a rash, too—a cardinal symptom of menigococcal meningitis—and ended up at the hospital, where his lungs failed and he went on a ventilator. When his limbs began to die, he underwent debridement, during which dead, damaged, or infected tissue is removed, which saved some of his limbs. He now walks with metal leg braces.
Youth at Risk
When Alicia Stillman’s daughter, Emily, developed a severe headache that ibuprofen didn’t relieve, she went to the hospital, where doctors initially treated her for a migraine. But Emily, a 19-year-old college sophomore, had meningitis B. She started to become more confused, and her brain rapidly swelled. The swelling never went down, even after a craniotomy, and she was declared brain dead.
“I said to her, ‘You go. You be at peace, and I will figure out what happened,’” Stillman recalls about that February morning in 2013. “I found out how I was going to live my life without my daughter but with her [still] in my life, because I talk about her every day in the work that I do.”
From that deep loss, Stillman found a new purpose. She and her husband created the Emily Stillman Foundation soon after their daughter’s death to advocate for meningitis education and prevention. “In my eyes, I didn’t have a choice,” says Stillman, of West Bloomfield, MI. “I didn’t fathom how I was going to go on with my life, but I just really believe that this was my calling.”
Stillman later teamed up with another mother, Patti Wukovits—whose daughter, Kimberly, died from meningitis just a week before her high school graduation—to launch the American Society for Meningitis Prevention. And today, prevention is possible thanks to groups like theirs and the vaccines, which have made an impact. In 2005, the Advisory Committee on Immunization Practices recommended that the ACWY vaccine be routinely used in children 11 to 18. Nationwide, the number of those infections then dropped 76 percent among ages 11 to 20 from 2006-10 to 2011-15, according to a study published in Clinical Infectious Diseases in 2017.
The disease continues to impact young people, though. Peak incidence occurs at ages 18 and 19, with college students more at risk than non-students, according to a 2021 report in Human Vaccines and Immunotherapeutics. Between 2007 and 2017, as many as 1 in 5 colleges in the United States experienced an outbreak of meningococcal disease within their own institution or one nearby, the study notes. College-associated outbreaks also accounted for about 20 percent of all meningococcal outbreaks in the country.
Doctors say outbreaks are more likely among college students because they come together from across the world to live in residence halls and eat together in cafeterias. Because meningitis passes through respiratory secretions, smoking and kissing can increase risk of transmission. Ingram’s son had shared juice with a friend in the college cafeteria, and both ended up coming down with meningitis at the same time.
“Put a lot of young people together and exchange bacteria, then there’s a risk of outbreak or single cases,” Dr. Brouwer says.
Raising Awareness
While vaccination can help protect this vulnerable population, Stillman and others have found that many parents do not know that different types of meningitis vaccines exist. And often, colleges and universities only require students, especially those living in residence halls, to receive the ACWY vaccine but not the one for meningitis B.
That was the case for Ingram’s son, Jackson. When it came time to fill out his medical paperwork ahead of his freshman year of college, she let him handle it himself. “I thought, he’s a big boy, almost 19, so I let him go to the doctor by himself,” she says. “Because the meningitis B vaccine wasn’t required—it was blacked out on the form—the doctor didn’t think to ask about it, and Jackson didn’t think to ask about it.”
Both Stillman and Wukovits’s daughters were vaccinated against meningitis A, C, W, and Y but died from meningitis B before that vaccine existed. It only became available in the United States in late 2014, and despite the potentially brutal consequences of the disease, the CDC does not “routinely recommend” it for all adolescents. (The CDC does suggest, however, that adults considered to be high-risk—including military personnel and those traveling to regions with higher incidences of the disease, such as sub-Saharan Africa—receive the meningitis B vaccine.)
The type B vaccine typically is given to 16 to 18 year olds in two or three doses a few months apart. Children usually receive the ACWY vaccine in two doses, generally around 11 and again around 16.
“For the most complete protection, I would recommend giving teens both meningitis vaccines even though the meningitis B [vaccine] is optional on the CDC schedule,” notes Allison Ford Messina, MD, chief of the division of infectious disease at Johns Hopkins All Children’s Hospital in St. Petersburg, FL. “This vaccine is so important because this disease is so fatal, and there is almost no time to intervene once your child becomes ill.”
Kiran Thakur, MD, an endowed associate professor of neurology and director of the neuroinfectious diseases program at Columbia University Irving Medical Center, says “significant data” show the vaccinations have reduced the number of meningitis cases in the United States. “Among those aged 16 to 22, incidence declined by approximately 35 percent annually,” she says. “These reductions are attributed to both direct protection and herd immunity effects of the vaccine.”
Dr. Thakur says the push for mandated vaccines gained momentum after several high-profile outbreaks; 27 states now require college students to receive the ACWY vaccine. Many colleges and universities mandate that vaccination, too, with some also requiring the vaccine for type B—the serogroup behind most recent campus outbreaks, Dr. Thakur notes.
Six states do not mandate vaccination but require colleges and universities to provide information about meningitis vaccines to students, according to the National Conference of State Legislatures, and most states that require vaccination allow for medical and/or religious exemptions.
Getting vaccinated is “the biggest no-brainer because of how fast the illness progresses,” Marso says. “It’s not the sort of thing where you can say, ‘Well, if I get it, then we’ll worry about it.’ I personally know probably a half-dozen families who have lost loved ones to this, and their loved ones died so quickly they didn’t even get to the hospital in time to say goodbye. For me, it was 24 hours from perfectly healthy to almost dead.
“You can’t wait for this one. You need to prevent it on the front end because even if everything goes right for you in terms of the care you receive, you can still die, you can still end up with losing limbs, [and] you can lose your hearing [or] your vision because of this one bacteria.”
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