Everyone knows that meningitis is serious and life-threatening. But it’s also an easy disease to put out of mind. Right up until the point when it suddenly becomes the most important and salient thing in the world.
One Friday evening, Kathryn Blain’s teenage son, Michael, had a backache. Nothing too serious. By Tuesday morning, Michael was in the intensive care ward of Toronto General Hospital in cardiac arrest from meningococcal septicemia.
Patsy Schanbaum’s 20-year-old daughter, Jamie, was a healthy second-year student at the University of Texas in Austin when she was suddenly hospitalized with meningococcal disease. Jamie spent seven months in the hospital. She survived but lost both legs below the knee and all her fingers to the disease. Among those who survive meningococcal disease, 10-15% experience lasting disability.
Today, Kathryn is the Executive Director of the Meningitis Foundation of Canada. Patsy is Founder of The J.A.M.I.E. Group and Americas Coordinator for the Confederation of Meningitis Organizations (CoMO). Because, once meningitis enters your life, it changes it forever.
October 5th is World Meningitis Day. For those of us so fortunate as to not have to think about meningitis every day for the rest of our lives, this is the moment for us to learn more about this disease and how it can be prevented. If we don’t choose to think about meningitis now, we may not have the choice later.
What is Meningitis?
It’s important to understand that meningitis is not a single disease. The word “meningitis” describes a number of different infections of the fluid that surrounds the brain and spinal cord. It’s estimated that 1.2 million people worldwide are affected every year by these infections, caused by a variety of different bacteria and viruses.
Bacterial meningitis—usually caused by one of several strains (or serogroups) of the meningococcal bacteria Neisseria meningitidis—causes approximately 135,000 deaths every year. It was bacterial meningitis that came for both Michael and Jamie.
“Meningococcal meningitis and invasive meningococcal disease can affect anyone, but children under the age of five and teenagers are at highest risk,” explains Brian Davies, Head of Insight and Policy at the Meningitis Research Foundation in the United Kingdom. “Certain environmental factors and behaviours also increase your risk of disease, such as living in crowded conditions and active and passive smoking. Meningococcal meningitis requires urgent treatment with antibiotics. Prompt recognition and hospital treatment offer the best chance of a good recovery, so it is important that everyone knows the signs and symptoms of meningitis and sepsis. Bacterial meningitis is one of the deadliest forms of meningitis, with the World Health Organization (WHO) estimating that around one in six people who get it will die.”
Bacterial meningitis is a transmissible disease. It spreads from person to person through droplets, through direct contact, and through shared surfaces and items. It is a social disease, and it is therefore especially important that we work to prevent and control it in environments where large groups of people live in close quarters for extended periods of time. In the modern world, this means that colleges and universities are a constant hotspot for meningitis outbreaks. And the teenagers and young adults who reside on campus are at risk of being exposed to this life-threatening and life-altering disease.
“These children, they study hard, and then they party hard,” says Patsy. “They’re immune-compromised, and they’re in these environments where they’re all smooshed together, so they set themselves up for being more vulnerable to meningitis. I almost lost my daughter, and I know people that have lost their children. People often refer to meningitis as rare, and I hate that word. When it happens to you, then it’s not so rare.”
How can Meningitis be Prevented?
Vaccination is the single best defence against meningococcal disease. Vaccination not only reduces the personal risk of infection, it is also thought to provide some community protection by slowing the spread of the disease.
There are multiple meningococcal vaccines, which protect against different serogroups or combinations of serogroups. Which vaccines make the most sense for an individual or a population will depend on which serogroups are prevalent in that country or region.
In Canada and the United States, serogroup B is a major cause of disease in college and university students. The United States has also seen several recent outbreaks of serogroup Y. In the band of Sub-Saharan African countries collectively known as the African Meningitis Belt, on the other hand, most cases are caused by serogroups C and W (although serogroup A was the cause of 90% of outbreaks here before widespread vaccination against it began in 2010). And, of course, global travel means that any region of the world can always find itself host to an outbreak with a serogroup that came from elsewhere.
How Important is Meningitis Vaccination?
When meningitis hasn’t yet affected you, your family, or your community, immunization against it can seem like an academic concern. Yes, of course, you know it’s better to be protected. But surely, if you or your kids needed a vaccine it would already be included in the routine immunization schedule, right?
“If you think your child is protected against meningitis, think again,” says Kathryn. “Chances are they’re not fully protected. Being a parent was the most fulfilling thing in my life. It was everything to me. To have that come to a grinding halt made me question everything. I lost my joy. But when I think of my son and all that he was and all that he stood for, I know that he would want me to help other people. He’d want me to raise awareness across Canada about meningitis, so that other families would not go through what we went through.”
For families like Kathryn’s and Patsy’s that have endured the tragedy of meningitis, it becomes immediately clear that meningitis vaccination is as important as anything can be. We should take their lead, which means we all have an obligation to ask which meningococcal vaccines are available to us.
In Canada, routine immunization provides a quadrivalent vaccine against serogroups A, C, Y, and W. But vaccination against meningitis B, as prevalent as it is the country’s schools, is usually something that Canadians must actively seek out and pay for out of pocket. In other countries, the vaccines that are available or covered will be different. Wherever you live, talk to your health care provider, so you can be informed about not only what vaccines have already been received, but also what options are available to you.
“Meningitis is a preventable disease,” says Patsy. “Every parent that sits up, says oh my God, and then checks to make sure their kids have got all the right meningitis vaccines, that’s a step in the right direction.”