Survivor of meningococcal meningitis, a rare but potentially deadly disease, shares his story to help underscore the importance of vaccination


Posted: September 20, 2022 | Word Count: 626

Jonathan DeGuzman thought he was experiencing flu symptoms. It was May 2005, and he was in college. He had shivers. His head hurt. His neck was stiff. He decided to lie down to rest.

When he opened his eyes again, he saw his mother attempting to wake him. She had grown increasingly more concerned as her unresponsive son began to develop a purplish-black rash on his legs — a symptom of a potentially deadly bacterial infection called meningococcal disease. Unfortunately, Jonathan hadn’t been vaccinated to help protect against it, as the vaccine wasn’t recommended by the Centers for Disease Control and Prevention (CDC) at that time.

As Jonathan floated in and out of consciousness, his parents rushed him to the hospital. He emerged from a coma twelve days later, and to his dismay, he discovered that the infection had caused gangrene in his limbs. In order to save his life, doctors amputated all his fingers and both feet. Jonathan and his family were heartbroken. When his mother was told the news, she couldn’t gather her thoughts, so she simply nodded. Jonathan, who loved to dance, now had to face the reality that he might never be able to dance again.

Fueled by determination, Jonathan eventually regained strength and re-learned to feed himself, walk — and dance again. He also returned to school to earn his master’s degree. Today, he works for the State of California, helping those with disabilities find housing and employment. He also serves as an advocate for the National Meningitis Association, sharing his survivor story to help stress the importance of getting teens vaccinated to help prevent meningococcal disease.

“I feel lucky,” he said. “I’m grateful that I’m a survivor. And I believe my purpose is to use the strength I’ve found through my journey to educate others on how to help protect against this potentially devastating disease.”

What is meningococcal disease?

Meningococcal disease, which includes meningococcal meningitis, is a rare but potentially deadly bacterial infection that can take the life of an otherwise healthy child or adult in one day. Adolescents are at increased risk because of lifestyle factors or behaviors like living in close quarters and socializing in crowded environments.

Meningococcal disease is contagious and can spread via respiratory droplets or contact with saliva, such as through activities like kissing or sharing beverages. Even with treatment, the CDC estimates that 10-15% of people who are infected will die, and that among survivors, as many as 1 in 5 (20%) live with long-term disabilities, such as brain or kidney damage, nervous system problems, hearing loss — or limb amputations, like Jonathan.

Unfortunately, many U.S. pre-teens do not get the first CDC-recommended dose of the MenACWY vaccine at age 11 or 12 years old, and approximately half miss the second dose when they are 16 years old, despite being at increased risk.

How can parents help protect their children?

The It’s About Time: Help Stop the Clock on Meningitis campaign by the National Meningitis Association in collaboration with Sanofi encourages all parents to talk with their kids about the need for CDC-recommended routine vaccinations, such as MenACWY and MenB.

If your child is behind on their routine immunizations, now is a great time to talk to your child’s healthcare professional to make sure they’re up to date on all CDC-recommended vaccinations.

“The risk is real,” said Jonathan. “Parents, don’t wait. Please speak with your child’s doctor to ensure they’re up to date on all adolescent vaccinations, including MenACWY and MenB.”

Visit HelpStopTheClock.org to learn more about how to help protect your pre-teen or teen from meningococcal meningitis, and to sign up for vaccine reminders.

Hear more about Jonathan’s story here.

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