Surviving Meningitis, Part 2

29 Apr

“Most experts are well-informed about treating the acute illness, but once meningococcal patients leave the hospital they are beyond our view. We’re focused on their survival. That’s no small task against meningococcal disease, but we don’t necessarily recognize that they will be dealing with the impact of the illness for the rest of their lives.” —Dr. William Schaffner, Vanderbilt University*

Last week we wrote about the physical and emotional costs survivors of meningococcal disease face, but long–term complications of meningitis may also create practical and financial challenges. NMA T.E.A.M. member Carl Buher explained it best when he spoke at the Centers for Disease Control and Prevention’s (CDC) Advisory Committee on Immunization Practice’s (ACIP) February meeting:

“My name is Carl Buher. I survived serogroup B meningitis when I was 14.Carl Buher

I spent five months in the hospital, lost three of my fingers and both my legs below the knee. I had 11 surgeries, and it took me four years before I could walk again using prosthetics.

I still consider myself lucky. Eleven years later, I have a college degree, a great job and a beautiful wife. Most survivors I know feel the same way. We have pretty good attitudes and remain positive.

No matter how lucky we are, most of us will deal with the effects of this disease for the rest of our lives […]

When we get together, we talk about the challenges that we deal with that most people don’t even think about. Things like how to take a shower when you are traveling, or how hard it is to count to 10 on your fingers when you are missing a few.

For most of us, it will affect our finances for the rest of our lives. Our cost of living will always be higher since we may need additional support. There are the more obvious things such as we may need more time off of work to deal with medical complications or additional surgeries. Even those of us with great insurance plans pay an enormous amount in co-pays and out-of-pocket expenses. But there other things that no insurance will cover, such as the cost to renovate homes so we can navigate in our wheel chairs or retrofitting cars to fit our needs.

We’re all very different, but there’s one thing we universally agree on. We don’t want anyone to have to go through what we went through – and what we still deal with every day.

When you look at the cost of prevention, I hope you’ll calculate how high the cost of survival is as well.”

We hope public health officials will think about our stories and Carl’s words as they consider broader recommendations for who should #BVaccinated. In the meantime, all of our M.O.M.s and T.E.A.M. members urge you to talk to your healthcare provider about both the vaccine against serogroups A, C, W and Y and the serogroup B vaccine.

*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 do.

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