Surviving Meningitis, Part 1

20 Apr

“When something horrible, like meningococcal disease, puts you in a hospital, in an intensive care unit for so long, you don’t come out the same.”

— Dr. Carol Baker,Texas Children’s Hospital*

Vaccines save lives. But did you know that they also protect against severe complications that can impact a person years after contracting a disease?

Up to 20 percent of meningococcal disease survivors live with long-term complications like hearing loss, amputations, brain damage or organ failure. Some of the challenges survivors face may be easily visible or evident to those around them, others are not. We asked a few of our T.E.A.M. members to share their experiences:

Amy AikenI still have a lot of challenges and complications. Prosthetics—the fitting—and my legs are so small and fragile, and skin grafted, that I constantly develop sores, wounds, blisters and infections, which can affect my walking, and sometimes it even sets me back into a wheelchair. We are also having complications with the kidney. It’s week by week. I have to get weekly blood work done. And I take about 30 pills a day. —Amy Aiken, survived four years ago at age 29

Mike LaForgia

I spent two months in the hospital. I needed to have amputations. […] It was a long recovery. After I came out of my coma, I couldn’t sleep. I had anxiety and fear and depression. I used to fall asleep and couldn’t sleep for more than 10 minutes before I would wake up violently just, you know, afraid I probably wasn’t going to wake up. –Mike LaForgia, survived 11 years ago at age 39

Kyla WintersI ended up becoming a quad amputee. I was on dialysis ten hours every day for a year. I went through rehab, and I had—I would say— maybe a dozen hand surgeries to try to lengthen my fingers. I was left with pretty much just fists, and I had to get my thumb separated and created to get opposition, because opposition is pretty much everything [in being able to use your hands]. –Kyla Winters, survived six years ago at age 37

Blake SchuchardtAfter my coma, it was another month before I was strong enough to leave the hospital and many months more before I could walk independently. My kidneys shut down, so I was on dialysis. It was only about a year before my kidney transplant, but I still take anti-rejection medications that need regular monitoring. Today I work as a dialysis nurse. —Blake Schuchardt, RN, survived 10 years ago at age 18

Casey MahlonWhen I left the hospital two weeks after waking up from a five-day coma, I couldn’t control my facial muscles. I got depression that went along with my inability to express emotion with my face. When I started college in the fall I realized I was having a problem with my memory and concentration. It took me a while to understand that it was a result of the disease and that I wasn’t just suddenly stupid and it took me a while to come to terms with the fact that this was a big deal. I still struggle with impressing on people the severity of the disease because they can’t see anything wrong with me. —Casey Mahlon, survived six years ago at age 17

Some of these advocates had not been vaccinated. Others had, but vaccines that were available at the time did not protect them against serogroup B meningococcal disease. Stay tuned next week when we’ll share a survivor’s perspective on why we need a routine recommendation for adolescents to #BVaccinated.

*At a January 2015 roundtable on meningococcal disease.

This post is part of the #BVaccinated series based on NMA’s report, Beyond the Science: Putting a Face on Meningococcal Disease. As national policy regarding serogroup B meningococcal vaccination is discussed and implemented, NMA urges all those involved to consider these perspectives. We believe that routinely vaccinating our children against this disease is the right thing to

3 Responses to “Surviving Meningitis, Part 1”

  1. Kaylee Lehner April 24, 2015 at 3:30 am #

    I am very thankful for the meningitis shots. I have received the meningitis shot and the booster. Thankfully the vaccination has protected me from being diagnosed. Even though vaccines are not one hundred percent effective, I know that they do help prevent disease. Meningitis is a horrible disease leaving people with life long effects.


  1. Surviving Meningitis, Part 2 | - April 29, 2015

    […] week we wrote about the physical and emotional costs survivors of meningococcal disease face, but long–term complications of meningitis may also […]

  2. Give Kids A Shot! | - May 5, 2015

    […] some of our T.E.A.M. members and has also improved the lives of many other meningitis survivors (about 20% of whom live with long-term complications including […]

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