Meningococcal disease, sometimes called bacterial meningitis, is a potentially fatal bacterial infection that can cause death or disability within hours. The effects of this disease can be devastating to those infected and their families, but the good news is: it can be prevented through proper vaccination.
The National Meningitis Association (NMA) is a nonprofit organization that was founded by parents whose children have died or live with permanent disabilities because of meningococcal disease. They make it their mission to educate families, medical professionals, and the general public about the disease and its prevention.
Beyond education, the NMA also provides a network of emotional support for affected families, and raises awareness of other preventable diseases and recommended vaccinations they believe the public has a right to be aware of.
History
NMA began in 2002, when there was little public awareness about meningococcal disease. Vaccination was not yet recommended, and there were no formal support structures available for affected families. It started with just a handful of parents whose families experienced firsthand the true impact of meningococcal disease. That small group of dedicated parents quickly grew into a national organization that advocates for meningococcal disease awareness and prevention on both a national and grassroots level.
Since then, the NMA has worked tirelessly, resulting in a number of important changes:
- Vaccination is now recommended by the Centers for Disease Control and Prevention for all preteens and teens as well as those of other ages with risk factors for the disease.
- Many states now require vaccination for adolescents; others require that families and college students be educated about prevention.
- Vaccination rates have climbed steadily in recent years while disease incidence has declined.
- Research and development are in progress to improve prevention options.
- NMA is proud to have played a role in increasing meningococcal disease awareness and vaccination rates.
Facts About the Disease and Prevention
According to NMA, approximately 600 – 1,000 people contract meningococcal disease in the U.S. each year. Though this number is at a historical low, it is still a major public health concern because contraction leads to death in 10-15 percent of cases. Among those who survive, as many as 20 percent live with permanent disabilities, such as brain damage, hearing loss, loss of kidney function, or limb amputations.
Adolescents and young adults are among those at the greatest risk for contracting the disease, with 21 percent of all meningococcal disease cases occurring in preteens, teens and young adults ages 11–24.
Prevention as well as speedy diagnosis is critical, as symptoms often mimic the flu or other viral infections. Every minute left undiagnosed and not properly treated puts patients at greater risk of suffering severe disability or death.
Important Statistics
While the rarity of the disease might dissuade some from taking it as seriously as they should, there are a number of important statistics to keep in mind when planning for your child’s or your own immunizations.
- 1 in 5 U.S. teens have not yet received their first dose of the meningococcal vaccination against serogroups A, C, W and Y and remain unprotected.
- Less than one-third of first dose recipients have received the recommended booster dose.
- Newer vaccines, recommended in 2015, can help protect those age 16-23 against meningococcal serogroup B, which the most common cause of disease in adolescents and young adults.
Volunteering
NMA volunteers come from a variety of backgrounds. Some are parents or family members of disease victims, some are meningococcal disease survivors themselves. Most have personally been affected by meningococcal disease. All are committed to sharing their stories in order to bring awareness to the disease and allow others have an opportunity to make informed decisions about immunization. They also encourage you to share your story.
Within the NMA umbrella are several factions of supporters:
M.O.M.s (Moms on Meningitis) is a coalition of more than 50 mothers from across the country who lost children or whose children’s lives were drastically affected by meningococcal disease.
T.E.A.M. (Together Educating About Meningitis) includes meningococcal disease survivors, siblings and other family members of those who have been affected by the disease.
Funding
The National Meningitis Association (NMA) receives funding in the form of individual donations, foundation donations, and unrestricted educational grants from corporations, including pharmaceutical companies. Though NMA maintains independence and control over all program and editorial content. You can donate here.
Official Recommendations
The Centers for Disease Control and Prevention (CDC) recommends routine vaccination against four of five major meningococcal disease serogroups at age 11-12 (serogroups A, C, W and Y) with a booster at age 16. Young adults between 16 and 23 years old should also ask a healthcare provider about vaccination against serogroup B.
The The National Meningitis Association has made a huge impact on public awareness, public policy, and the course of this horrible disease. With the continued efforts of their dedicated volunteers, hopefully they can ensure the awareness and availability of vaccination for all children, young adults, and those at risk for contracting the disease. No individual or family should have to deal with the uncertainty and devastation that comes with it.