On the night of January 31st, 2013, at about 10, Emily Stillman called home to her mother. After chatting about how she was settling into the semester, Emily told her mother she had a headache. Alicia Stillman thinking her daughter was simply overtired from her classes told her to rest. Twelve hours later, Emily was taken to the hospital by a roommate. Her headache had become unbearable overnight. Less than twenty-four hours later Alicia got a call from her daughter's university and left work to drive across the state to be with her daughter. Alicia was told that her daughter had been placed in a medically induced coma. 36 hours later, Emily had passed away.
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The doctors had diagnosed Emily with Serogroup B of Meningococcal Disease, commonly known as Meningitis B or MenB. Stillman, was initially shocked to hear her daughter had Meningitis. “I remember asking the doctor,” Alicia says, “if she’s vaccinated, how could this happen?“ Unknown to Alicia, at the time of Emily’s diagnosis, while there was a vaccine that protected against specifically MenB it had not yet been approved in the US. Technically, Alicia was right. Emily had been fully vaccinated under the current recommendations, and had in fact received the most common US Meningitis vaccine which does not cover Serogroup B of Meningitis. This meant that despite having all the recommended vaccinations Emily was still vulnerable to MenB. Even though the odds were minuscule, she contracted the virus and was ultimately unable to recover.
Like all forms of Meningitis, Meningitis B is rare but devastating. As in Emily’s case, Meningitis B can feel a lot like any other sickness in its early stages but the condition often progresses rapidly into severe and deadly symptoms. MenB is especially serious as the condition has a high fatality rate and survivors risk long-term side effects like brain damage, amputation, or deafness. While there are only about 200 cases of MenB a year, for those that the condition does affect the consequences are severe and often deadly.
Surprisingly, despite the rarity of MenB, stories like Emily’s are not entirely uncommon.
Between 2013-2018, eight college campuses experienced recorded outbreaks of Meningitis B. Statistics like these are especially concerning to people like Alicia Stillman, who feel these outbreaks are only part of a larger trend, one that is often misunderstood. Stillman elaborated on this concern, and remarks that, “Because the majority of cases are isolated incidents, people don’t hear about it. It seems so rare. You only hear about Meningitis B when there is an outbreak.”
Her thinking is that while news about dramatic outbreaks often makes headlines, they don’t properly express the insidious danger MenB poses to college students. The most common cases are like Emily, what Stillman refers to as, “the Ones and Twos,” individual or isolated events that don’t achieve ‘outbreak’ status.
According to the Center for Disease Control (CDC),
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“A meningococcal disease outbreak occurs when multiple cases of the same serogroup (type) happen in a population over a short time period.” Meaning, that while technically a health official may declare an outbreak after only two cases, they
do not always for a variety of reasons. Emily’s case, for example, wasn’t linked to an outbreak, but is still part of a disturbing trend that suggests Meningitis B cases disproportionately affect college students like her.
According to a report published by Pediatrics, between the ages of 18-24
students are three and a half times more likely to develop meningitis B than those who aren’t enrolled. This report, by looking at people aged 18-24 who were diagnosed with MenB between 2014-2016, found that 32% of the total number of cases were related to outbreaks on college campuses. While the rest were reported to be isolated cases, examples like Emily show that isolated incidents can still be linked to college campuses. Overall, this study concluded that college students were 3.54 more likely to become infected with MenB than others of the same age.
While it cannot be said definitively, many believe Meningitis B is more common among college students because of the nature of the setting. Dorm halls in particular host large groups of people in constant close proximity to each other. The bacteria that cause MenB
lives in the throat, and needs to be spread directly from one person to another, for example, through droplets in coughs, sneezes, or saliva, because of this people need to be in close contact in order to spread the condition. When considering the close quarters that the dorm environment creates and the fact that that
10% of the population carries the bacteria known to cause MenB without getting sick, there is an intuitive risk for Men B on campus. However, despite this increased risk, Alicia and her daughter were never warned about Meningitis B. An omission which resulted in tragedy in Emily’s case and many others like hers.
However, Emily’s story doesn’t end in tragedy. Alicia and her family made the difficult decision to donate her organs, and because of Emily, five people got the transplants they needed to live. Soon after Emily’s death, Alicia was shocked to learn that there was already a vaccine that prevented against Meningitis B available elsewhere in the world, and quickly became dedicated to spreading awareness. The knowledge that every case of MenB could be prevented through a simple vaccination gave Alicia a new purpose. Once again, Emily’s death could be the reason someone else lives. “It pushed me to make sure this doesn’t happen for other families,” she says, “It gave me a voice [and a way] to make sure that my daughter didn’t die in vain. There is nothing I can do to bring her back, but there are millions of other Emilys out there.”
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Motivated by the knowledge that could potentially save lives, Alicia went on to found the
Emily Stillman Foundation. This organization became Alicia’s way of creating a living memorial for her daughter. Stillman describes it as a way to preserve Emily’s memory, and this is reflected in their three-pronged mission. Since beginning her work, Alicia has grown the Emily Stillman Foundation into a global advocate for health and wellness issues, raising awareness of MenB and encouraging organ and tissue donation.
Thanks to the efforts of Alicia and the Emily Stillman Foundation, great strides have been made in the United States to protect against Meningitis B. Before MenB vaccinations were made available in the US, The Emily Stillman Foundation launched Get Vaccinated programs that chartered buses into Canada, and where concerned patients were able to obtain the MenB vaccines. This effort brought considerable attention to the cause, and eventually, thanks in part to advocates like Alicia Stillman, two MenB vaccines have since become licensed in the United States: one in October of 2014 and another in January of 2015.
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Currently, these vaccines are not required, but the CDC recommends that any who are at risk for MenB exposure receive the vaccine, including adolescents and young adults age 16 to 23. While access to the vaccine remains varied, and
often expensive, the Emily Stillman Foundation has continued their Get Vaccinated programs stateside. Through these programs and partnerships with local clinics, vaccines are made available to program participants, often at no cost.
For nearly seven years now, Alicia has honored the memory of her daughter through her work with the Emily Stillman Foundation. Looking forward, Alicia still has concerns about the availability of MenB vaccines and plans to continue advocating for MenB vaccination as part of routine immunization. Driven by the memory of her daughter, Alicia remains dedicated to a world without MenB, hoping that one day there will be no more stories like Emily’s.
More information about Emily Stillman’s Story, Meningitis B and how to get vaccinated can be found at:
https://www.foreveremily.org/
This article is part of a three-part series on vaccination and the public health in West Michigan sponsored by the Kent County Health Department. Articles and their content are journalistically independent of and not reviewed by the KCHD. For reliable and evidence-based scientific information on communicable diseases and immunization in Michigan, visit the Michigan Department of Health and Human Services.