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Meningococcal disease: My survival story

By: Brandpoint

April 28, 2025 at 09:01 AM EDT

(BPT) - By Jonathan Deguzman

The doctors who saved my life in 2005 had to amputate all 10 of my fingers and both of my feet, in order to do so.

The loss of my limbs was due to gangrene, which was caused by a highly contagious and deadly infection called meningococcal disease, a form of bacterial meningitis. I hadn't been vaccinated against the disease as the shot wasn't recommended by the Centers for Disease Control and Prevention (CDC) at that time. The consequences were devastating. I learned my fingers and feet had been amputated after I emerged from a 12-day coma.

The first few hours of a case of meningococcal disease are easy to dismiss as nothing too serious, like a common cold or case of influenza. The initial meningococcal disease symptoms I experienced looked a lot like the flu: Shivers. A headache. Stiff neck. It's not unusual for everyone to mistake the early symptoms of IMD for a more common viral infection. But making that mistake can be deadly. With meningitis, membranes surrounding the brain and spinal cord become inflamed. Meningococcal disease is fatal for 10 to 15 in 100 people, sometimes within only a matter of hours. It's one of the reasons why I support the CDC's recommendation to vaccinate 11- and 12-year-olds against the disease - and why any change to these recommendations should be carefully considered.

The proposed potential changes to the MenACWY recommendation would eliminate the recommendation that has been in place for almost 20 years to give a dose of this vaccine to kids at ages 11-12 years, leaving only a single dose at age 16, meaning healthcare professionals would miss out on a critical opportunity to help protect children entering the high-risk adolescent age group. At ages 11 and 12, children are not only at risk of contracting meningitis, they are also more likely than older teenagers to receive routine preventive care. These check-ups and vaccine appointments are critical opportunities for young adolescents to be educated on the symptoms of meningococcal disease. At this age, they are starting to participate in the activities that might lead them to catch this disease. Meningococcal meningitis is contagious and can spread via respiratory droplets or from contact with saliva, meaning it can spread through activities like kissing or sharing beverages.

I grew up during the pre-vaccination era for meningococcal disease. Back then, the risk of contracting meningococcal disease among adolescents began to increase as early as age 11. Fortunately, the current CDC-recommended, two-part vaccination schedule, which advises that a first dose be given at ages 11-12 and a booster dose at 16 years old, has contributed to a significant decrease in disease incidence in the adolescent age group.

If I had known about meningococcal disease, and if I had known a vaccine was available, I believe I wouldn't be using prosthetics today. I had never even heard the word "meningitis" until I emerged from a coma 19 years ago and learned about my diagnosis from my father. My mother, however, was speechless. When I was in that coma for nearly two weeks, my parents had started planning for my funeral. She knew then, and we never forget, even two decades later, how lucky we are.

Like me, one in five survivors of meningococcal disease will experience long-term effects from the disease, such as deafness, brain damage, nervous system problems, and loss of limbs. Although rare, cases can be deadly, with case fatality rates ranging from 10 to 15 percent. Statistics and stories like mine can be hard to talk about. But I never forget that up to 15 percent of the people who contract meningococcal disease cannot tell their own story. I tell mine for them - and so that other people won't share our experience.

This article was published with the support of Sanofi.

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