Feature Article: Families Affected by Meningitis Urge Others to Learn About Symptoms and Prevention

A guest article by Lynn Bozof, president of the National Meningitis Association

My son Evan was a college junior when he lost his life to meningococcal disease, which is often referred to as bacterial meningitis. He was a pitcher for his college baseball team and in excellent health. He called me on an otherwise ordinary Wednesday morning in March 1998 to say he had a terrible migraine. When the symptoms worsened, I suggested he go to the emergency room. Within hours, Evan was in intensive care. For weeks, he struggled to fight the infection. We watched helplessly as Evan endured amputation of all four limbs and finally lost his struggle 26 days after that phone call.
As a parent who lost a son to meningococcal disease, my heart goes out to the students and families affected by the recent meningitis outbreaks at Princeton University and the University of California, Santa Barbara (UCSB).

When Evan became ill, I had no idea that adolescents and young adults have a higher risk for meningococcal disease or that the disease could be so deadly or debilitating. Although it is rare, meningococcal disease leads to death in 10-14 percent of cases, and among those who survive, one in five suffer long-term complications such as organ or brain damage, hearing loss or limb amputations.

I soon met other parents with similar stories as well as disease survivors managing lifelong health consequences from their illness. Although there was a vaccine in use by the military at the time, vaccination was not yet recommended as it is today for preteens and teens. No parent should have to endure watching their child suffer or lose a child to a potentially preventable illness. We formed the National Meningitis Association (NMA) in 2002 to prevent other families from experiencing the same loss or devastation. 

Routine vaccination for meningococcus and recent disease outbreaks

So much has changed since then. The U.S. Centers for Disease Control and Prevention now recommends routine vaccination of kids when they are 11-12 years old, with a booster at age 16, to help protect them from meningococcal disease. These vaccinations help prevent the majority of cases among adolescents that are caused by four strains of the disease.

All 12 cases in the recent outbreaks (eight at Princeton and four at UCSB) were caused by serogroup B meningococcal disease, which is not covered by current vaccines. While the affected students have survived, one — a lacrosse player at UCSB — lost both feet to the infection. Others are suffering from residual neurological affects.
Although none of the Princeton or UCSB students died, B-strain meningococcal disease can be deadly. NMA Mom on Meningitis (M.O.M.) Alicia Stillman lost her 19-year-old daughter, Emily, to serogroup-B meningococcal disease in February 2013. Emily was a sophomore at a small private liberal arts college. Like Evan, her symptoms began with a severe headache. Emily passed away within 36 hours despite medical efforts to save her life. Emily had been vaccinated. Alicia takes some comfort in knowing she did everything in her power to protect Emily at that time, but she would have given anything for an opportunity to further protect Emily. (Watch Alicia share her story.)

Emily’s case and those at Princeton and UCSB remind us that it is critical for everyone — students, faculty, families and healthcare professionals — to learn about the symptoms of meningococcal disease and seek prompt medical attention. It is especially important because the infection can be mistaken for flu, other viral infections, or migraines.
NMA supports the decisions at Princeton and UCSB to make the serogroup B meningococcal vaccine, currently approved for use in Europe, Canada, and Australia, available to students and faculty to protect them during this outbreak. We hope that one day soon, vaccines will be used routinely in the U.S. to provide the broadest protection possible.

Tips for protecting your children against meningococcus

We encourage all parents to:

• Learn the symptoms of meningococcal disease and educate your children about the symptoms.
• Make sure your children are vaccinated against meningococcal disease at age 11 to 12, in addition to receiving other recommended vaccines at that time (e.g., Tdap, HPV).
• Schedule a booster meningococcal vaccination for teens at age 16.
• Double check that your children have received a meningococcal vaccination before college.

About NMA

NMA works to protect families from the potentially devastating effects of meningococcal disease by educating the public, medical professionals and others about the disease and its prevention. The NMA network also provides critical emotional support for families who have been affected by meningococcal disease.

Visit NMA at http://www.nmaus.org or find us on Facebook or Twitter.