Archive | April, 2015

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.

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

A Difficult Diagnosis

10 Apr

Early symptoms of meningococcal disease can be non-specific and similar to those of other illnesses like flu. However, as we’ve mentioned before, meningitis can then make someone very sick, very fast.

Symptoms VisualThis means that quickly and accurately diagnosing meningococcal disease can be challenging, even for veteran healthcare professionals. We spoke with a few doctors about their personal experiences with this terrible disease:

“If a patient comes in with a high fever, stiff neck and the typical rash, most physicians will make a meningococcal disease diagnosis very quickly. But that typical presentation only happened in a very small proportion of our cases.” – Peter Johnsen, MD, Director of Medical Services, Princeton University

“I was told about an infant who returned with a new rash, after being seen and diagnosed with a virus hours earlier. The emergency medicine physician treating this infant on his return, who had more than 25 years of emergency department experience, realized the baby was sick but did not recognize the rash as typical of meningococcemia. Despite appropriate antibiotics, the infant died within 90 minutes after being admitted to the pediatric ICU.” – Paul Lee, MD, pediatric attending physician, Winthrop-University Hospital

“We need to be vigilant in our training of young doctors so they are aware of the signs. They need to know that many cases won’t look like the textbook examples of meningitis or meningococcemia when they walk in the door.” – Carol Baker, MD, pediatric infectious disease specialist and vaccine expert, Texas Children’s Hospital

Thankfully, we can help prevent the need for some of these diagnoses, we can vaccinate. Please talk to your doctor about this disease and its symptoms. Ask them if your children are up-to-date on the vaccine against serogroups A, C, W, and Y and about having your teens #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.