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My Daughter Survived Meningitis: What I Want Other Parents to Know

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It’s the call every mother dreads: “Your daughter is in the hospital; please get here as soon as you can.”

Nine years ago, I got that call. My youngest daughter, Jamie Schanbaum was in her first semester at the University of Texas–Austin when she got meningococcal disease, or meningitis. At first she thought she had the flu, but her symptoms, which came on so suddenly, got worse very quickly. Jamie’s sister called the next day to give her a ride to school but ended up driving Jamie to the hospital instead.

I flew to Austin immediately. We watched as Jamie went from healthy and free-spirited to very sick. She lost all ten of her fingers and had both legs amputated below the knee. I didn’t know that meningitis could have that effect. In addition to the amputations, Jamie had several surgeries and endured tremendous pain, weight loss and hair loss. The recovery process was challenging – she spent several months in the hospital followed by rehabilitation and learning to use her prosthetics.

Jamie was fortunate to have survived meningitis. While uncommon, one in 10 of those who contract it will die, and one in five will suffer lifelong impact, as Jamie does. In fact, just a few weeks ago, Jamie was back in the hospital. The prosthetic devices on her legs caused massive swelling in her joints, and the doctors feared infection, which can be very serious.

In the midst of it all, it’s been amazing to see my daughter grow and become a powerful adult. Jamie never stopped working hard to achieve her dreams, and she went on to become a Para-athlete. Working together, we founded a nonprofit in Texas, the J.A.M.I.E. group (Joint Advocacy of Meningococcal Information & Education) to help educate about the impact of meningitis and we are both working with GSK to share important information about this condition. And now we are busy planning her upcoming wedding!

Vaccine-preventable diseases such as bacterial meningitis continue to impact our communities. As a mother of a meningitis survivor I have a very personal reason for educating parents about vaccination, and I want to make sure that that every young person and their parents know about the two different types of vaccines that are available to help protect against the five vaccine-preventable groups of meningitis – A, C, W, Y and B. If you’ve had the vaccine for A, C, W, and Y, you need a different vaccine to help protect against meningitis B. While uncommon, meningitis can be fatal or cause disability, sometimes within 24 hours. Symptoms can include fever, headache, and stiff neck as well as nausea and sensitivity to light. Additionally, our youth are at increased risk due to close contact with each other: this includes sharing drinks, kissing, and living in close quarters, such as dormitories.

As our kids head off to camp, and soon, to college, I invite you to #take5formeningitis — both to help protect your kids and help your friends, family, and community protect theirs. And please, talk to your doctor or visit meningitis.com to learn more about the vaccines available to help prevent this disease.

This is my daughter’s story and not necessarily representative of others’ experiences.

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