A Rare Disease, a Wide Impact

12 May

Approximately 600 – 1,000 people contract meningococcal disease in the U.S. each year. By epidemiological standards it is a rare disease, but that label disguises a much wider ripple effect.

At our January roundtable, NMA advocates spoke not only of the tremendous personal impact of surviving meningitis or of losing a child, but also of the ways one case of meningococcal disease can impact siblings, grandparents, extended family, friends, healthcare providers and community members.

Kyla shared how grateful she was for her sisters who helped care for her and who she knows were deeply affected by her illness: “The family members really suffer. My sisters suffered more than I did. I ended up as a quad amputee with a kidney transplant but they suffered significantly more than I did, especially my twin—she probably has PTSD. She was six months pregnant, had a young son and a husband and she moved her whole family from the Bay Area [San Francisco] to San Diego to take care of me. And then a year later, she donated the kidney that allowed me to get off of daily dialysis.”

Mike reflected on his family’s emotional journey: “A young girl asked me if I could go back and stop what happened to me, would I? My initial reaction is, “Of course,” because you know, to see what my wife went through—two of my three kids still struggle with what they went through. To see my 80-year-old father at the time, the only memory I have around the coma was my father standing over my bed, crying.”

Patti shared how losing her daughter to serogroup B meningitis still affects her relationships: “Since Kim died, I’m not the same wife to my husband. I’m not the same mother to my son. I’m not the same daughter to my parents.”

Sue spoke about the moment she lost her nephew to meningococcal disease, highlighting how the loss can be just as heartbreaking for extended family members: “I didn’t say goodbye to Evan in the hospital. Everyone else went in to say goodbye to him but me. I wanted to remember him as he had been. I should have gone in. And that will stay with me always.”

These stories represent just a fraction of the true reach of meningitis. Maybe you are reading this because you too are one of the many whose life has, in some way, been impacted by meningococcal disease.

Whether you have a personal connection or not, I hope you will join us in preventing this disease from impacting anyone else. Spread the word that all teens need to be vaccinated against serogroups A, C, W, and Y at age 11-12 and again at 16 and everyone should ask their healthcare provider about getting #BVaccinated.

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 do.

One Response to “A Rare Disease, a Wide Impact”


  1. Jean’s Answers | - May 14, 2015

    […] this week we shared some perspectives on the often overlooked impact of meningococcal disease on friends and family members. We have one […]

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