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.

15 Percent

30 Mar

In 1919, when describing an outbreak of 315 cases of meningococcal disease on his military base, Dr. William Herrick stated that despite immediate medical attention, “No other infection so quickly slays.” Even though significant advancements in critical care medicine have been made in the nearly 100 years since, there has been very little change in meningococcal disease fatality rates. Up to 15 percent or more of adolescents who get meningococcal disease die.

That may be just a statistic to some, but we must not forget that it represents real people and real loss. My son Evan died of meningococcal disease 17 years ago and through NMA I have met too many others who share my heartache.

Thomas Kent, son of M.O.M. Robbin Thibodeaux and Evan Bozof, son of M.O.M. Lynn Bozof.

Thomas, son of M.O.M. Robbin and Evan, son of M.O.M. Lynn

Like Robbin who also lost her son, Thomas, who was just 19 years old. She says, “I knew something was strange because he was coming home for Christmas Eve and I hadn’t heard from him. That wasn’t like him. Instead, I got the call that he was in the hospital and that he was falling in and out of consciousness. That was 5 pm. Thomas died in my arms just eight hours later, at 1:02 am on Christmas Day.”

Or, Lucia who lost her sister Andrea,Andrea was away at college. She called our parents because she had a high fever. She went to the ER but was sent home with a diagnosis of a viral infection. The next day she was found unconscious and was rushed back to the hospital, but it was too late.”

Because of these experiences, our mission is to spread the word about prevention so that no one else has to lose a loved one.

Teens need to be vaccinated against serogroups A, C, W and Y as recommended at age 11-12 and again at 16 and parents should to ask a healthcare provider about getting their teens the serogroup B vaccine. Don’t hesitate, #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.

Why a Recommendation to #BVaccinated Matters

20 Mar

So what are we talking about when we talk about national policy discussions?

FDA Approval and CDC Recommendations

Once a vaccine is approved by the U.S. Food and Drug Administration (FDA), the Centers for Disease Control and Prevention’s (CDC) Advisory Committee on Immunization Practices (ACIP), a group of medical and public health experts, makes recommendations on how the vaccine should be used in the U.S. Once the recommendations are approved by the Director of the CDC and published, they become part of the official immunization schedule. You can learn more about the ACIP and the recommendation process here.

The CDC currently recommends routine vaccination with meningococcal quadrivalent vaccines that protect against four major serogroups (A, C, W and Y) for children at 11-12 years old with a booster dose at age 16.

Following recent FDA approval of two vaccines that protect against a fifth major serogroup (B), ACIP voted to recommend serogroup B vaccination for a small group of individuals who are at increased risk for contracting this infection. This includes people with a rare immune deficiency or problems with their spleens, scientists who work with meningococcal bacteria in labs and those who are in the middle of an outbreak setting, like college students on a campus where meningitis cases are occurring. ACIP will be meeting again in June to discuss broadening these recommendations to provide protection to more people.

(Note: Even while broader recommendations are pending, healthcare professionals can provide this vaccination. NMA urges parents to talk to their teen’s healthcare provider about meningitis B prevention.)

CDC’s recommendations are guidelines, not requirements. Some states have policies to help increase meningococcal vaccination rates by requiring either education (parents and/or students must be informed about meningococcal disease and its prevention) or actual vaccination for school entry. These policies are almost always based on the CDC recommendations. States with one or more vaccination mandates tend to have the highest meningococcal vaccination rates. In some states without a vaccination requirement, colleges and universities have their own requirements for enrollment.

Why is a CDC recommendation so important?

Because vaccination is the best protection we have and NMA supports the broadest possible access to all vaccines. A recommendation from the CDC makes this possible by setting vaccine schedules, prompting healthcare providers to recommend vaccines, and potentially reducing financial barriers.

Coverage rates for the A, C, W and Y meningococcal vaccines, which were first recommended routinely in 2005, have increased every year from 2006 to 2013. Nearly 80 percent of teens between the ages of 13 and 17 have received at least one dose. While we still have more to do to increase uptake of the booster dose (only 30 percent of teens who received the first dose also received the booster in 2013), it has only been recommended since 2011.

Vaccine Coverage Data

However, these vaccines alone are not enough because they do not protect against serogroup B, which currently causes about one-third of all U.S. cases and the majority of meningococcal disease in U.S. adolescents.

NMA is working to educate about the availability and importance of serogroup B vaccines, but we believe that adding them to the routine recommendations is the best way to make sure that all adolescents are protected. It’s the right thing to do.


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.

Very Sick, Very Fast

10 Mar

Meningococcal disease comes out of the blue. One day you have a healthy child and then the next day they’re fighting for their life. If left untreated, the disease can progress rapidly and kill an otherwise healthy person in 48 hours or less.

Meningococcal Disease Progression Timeline

Here are just a few first-hand accounts of the suddenness and shock of someone you love or a patient you are treating becoming very sick, very fast:

  • I was lying in the bed with Kim when she said “My ankles feel like they’re bleeding.” Within minutes she could not get up, could not get dressed. – Patti Wukovits, RN, mother of Kimberly, died at age 17
  • When she came in, her fever was about 100 to 101. She was cheerful and smiling. She looked fine and said she was feeling better than she had the night before. We were cautious because we’d already had meningococcal cases on campus, so we took blood and sent her to the emergency room. She did not have a rash when we sent her, but just a few minutes later when she arrived at the ER, the first spots were appearing on her skin and she went rapidly downhill from there. – Peter Johnsen, MD, Director of Medical Services, Princeton University
  • There was no time or possibility for a missed diagnosis for Stephanie. She went to bed earlier than normal one night because she felt very tired. The next morning when she didn’t turn off her alarm, her sorority sisters found her unresponsive in her bed. Stephanie was rushed to the hospital where she died after several hours of trying to revive her. She was just 19. – Stephen and Beverly Ross, parents of Stephanie, died at age 19

This speed is part of what makes this disease so frightening—it also makes prevention critical. Let’s make sure all teens receive the vaccination against serogroups A, C, W and Y as recommended at age 11-12 and again at 16, and talk to a 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.

Why #BVaccinated?

23 Feb

What is the cost of meningococcal disease?

Who does it impact?

When/for whom should vaccination be recommended?

These are some of the questions that policymakers will ask as they consider how to recommend the new vaccines to protect against serogroup B meningococcal disease.

To find the answers, we believe it is necessary to talk—and listen to—the people directly affected by the disease.

That starts with survivors, but also includes the families and friends of those who get sick; parents, students, faculty, staff and community members who have experienced a case, or an outbreak, on campus; and healthcare professionals who must make a difficult diagnosis and fight a fast-moving disease.

NMA has brought together a cross-section of advocates to give voice to the concerns of all of these groups in a new report: Beyond the Science: Putting a Face on Meningococcal Disease.
cover

As national policy is discussed and implemented, we urge all those involved to consider these perspectives, especially in light of recent cases and outbreaks on college campuses.

For the next few weeks we’ll be making the case that routinely vaccinating our children against this disease is the right thing to do, by taking an in-depth look at the stories and topics covered in this report.

We hope you will follow along, ask questions, share your thoughts and spread the word using #BVaccinated.

Recent College Cases Reinforce Need for Prevention

10 Feb

My son Evan was a pitcher for his college baseball team and in excellent health. Cherice was studying hard to fulfill her dream of becoming a doctor. Caitlin was on the Dean’s list and the captain of her school’s dance team.

When you send your child off to college their future is full of hope and infinite possibilities. Meningococcal disease shouldn’t be one of them, but unfortunately young adults and college students are at increased risk for bacterial meningitis.

In recent weeks, there have been at least five meningococcal disease cases confirmed at college campuses across the United States, with an additional case suspected. At Providence College in Rhode Island, two students were diagnosed with serogroup B meningitis. At the University of Oregon, three students are reported to have meningococcemia; so far one case has been confirmed as serogroup B. This weekend, a student at Yale University in Connecticut was hospitalized for a suspected case of meningitis. We continue to hope for a quick recovery for each of these students.

Many of our M.O.M.s and T.E.A.M. members did not have the opportunity to protect their children or themselves from this terrible disease, but now you do.

We encourage all parents and college students to make sure they are up-to-date with the currently recommended vaccines, including the meningococcal booster before they leave for campus. They should also speak to their healthcare provider about the new vaccines to protect against serogroup B.

For our part, NMA will continue pushing forward until all children are protected from this disease and no family has to go through what our families have.

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