Demystifying Meningitis

One Long Islanderís encounter with the deadly disease.

Six years ago, on a cold January night, doctors at Stony Brook University Medical Center told my family to say their goodbyes. At age 40, I was in a coma and not expected to survive the infection that was ravaging my body. To everyone’s surprise, I lived, but not without consequence. Doctors had to amputate my right leg below the knee and part of my left foot. I later discovered I had meningococcal disease, also known as bacterial meningitis.

Only a few days prior to my hospitalization, I had celebrated New Year’s Eve, looking forward to the promise of things to come. I was healthy and athletic and never thought my life could change so drastically in a matter of days.

While meningococcal disease is rare, it can be devastating. One in nine people who get it die. And tragically, it can take a life within hours. For those who survive, one in five people experience serious health consequences, such as amputations, organ damage or hearing loss. The disease can suddenly become apparent and is often misdiagnosed because early symptoms are so similar to those of the flu.

I had never heard of meningococcal disease before my illness. And I was surprised to later meet many other families who have been affected by it. I made these connections through the National Meningitis Association (NMA), which is an organization formed by parents who either lost a child to the disease or whose child’s life permanently changed from it. NMA’s mission is to educate families, healthcare professionals and others about the dangers of bacterial meningitis and the importance of prevention.

Adolescents and young adults are at higher risk for the infection, which is why the Centers for Disease Control and Prevention (CDC) recommends meningococcal vaccination for all kids ages 11-12 with a booster at 16. As a father of three, I was relieved to learn that there is a way to protect my children, and they have all received the vaccine.

In 2007, I joined NMA’s Together Educating About Meningitis (T.E.A.M.) program, which includes survivors, siblings and other family members— many of whom contracted the disease as teens or young adults. As part of T.E.A.M., I work to educate Long Island residents about meningococcal disease, including its signs and symptoms, and the vaccination recommendations for kids.

I’ve partnered with members of Long Island PTA groups to distribute educational materials to reach parents, schools, administrators and students. I speak annually at West Babylon Junior High School, telling my story to nearly 400 7th grade students and teachers.

Before I was sick, I was an avid runner and had completed the New York City marathon twice. I made up my mind early in the recovery process that I was going to race again. After months of rehabilitation and years of training, I completed the marathon again in 2009, raising funds to benefit NMA’s mission. I also shared my journey with local newspapers to help raise awareness. In 2010, there were several meningococcal disease cases reported in New York, and NMA asked if I would be willing to share my experience with the media. I jumped at the opportunity because I knew I could reach thousands of people with critical prevention information.

Join me in my efforts to create a safer, healthier Long Island by spreading the word about this preventable disease by visiting www.nmaus.org.

I’m not alone in my quest to educate others. There are other disease survivors and parents, including Heather and Carol Tufano, who are working on behalf of NMA to encourage meningococcal prevention on Long Island and in the tri-state area.

“The work of volunteers from NMA, like Mike and the Tufanos, is critical to making sure our community knows about meningococcal disease and understands how they can protect themselves,” says Paul Lee, M.D., a pediatric infectious disease specialist at Winthrop-University Hospital in Mineola. “Although I can share statistics and facts about this disease, it’s their stories that help families understand why vaccination is so important.”
I’m pleased to report that meningococcal vaccination rates for teens in New York are higher than the national average. But three in ten of this demographic still remain unvaccinated.