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On World Meningitis Day, National Meningitis Association President Reflects on 20 Years

24 Apr

Lynn Bozof Shares Her Story, Highlights Importance of Meningococcal Vaccination

April 24, 2018

April 20, 1998, is a day my family will never forget nor ever get over.  It was the day our 20-year-old son, Evan, lost his 26-day battle with meningococcal meningitis.  On March 26, 1998, the day Evan was diagnosed, we knew nothing about meningococcal disease, other than that it was something that happened to other people.

That March 26 was a dreary, still wintry day.   When we returned home after Evan’s funeral, weeks later in April, everything looked different.  The trees and flowers had bloomed – brilliant pinks and yellows.  How could the world look so pretty when my heart was so devastated? Those images have stuck with me for 20 years.

Losing our son irrevocably changed our lives. Now, every day is cast in his shadow. One of my brightest sources of light has been keeping Evan’s memory alive by encouraging families and young people to learn about and protect themselves against meningococcal meningitis.

When Evan got sick, we drove three hours to his university, not knowing if he would be alive when we got there.  Those were the days before we had cell phones.  We stopped midway to check on him.  The hospital told us it was very critical.  When we first saw Evan in an oxygen tent, Evan told my husband it took every ounce of energy he had to roll over.

Each of those 26 days when Evan was in the hospital came with its own nightmare, but there are a few that stand out more than others.  My younger son, Ryan, asked me if there was life after death – this was after we had been told that Evan had a 1% chance of survival.  I was trying to absorb what the doctors are saying, while at the same time choosing words to comfort my younger son.

Then there was the night that Evan came out of sedation, unexpectedly, and saw his arms and legs black and charred from gangrene.  No one thought he had the strength to lift himself up.  Evan was intubated, so he couldn’t talk to us, but we could see the terror in his eyes.  He went into a panic attack, with his fever spiking and all numbers out of whack.  A wonderful neurologist came in and talked to Evan, told him he had almost died but would be okay.  After that, the sedation was increased so Evan would not wake up unexpectedly.

Then the day of the amputations – the nurse coming into the waiting room four times, after each limb was amputated, and finally the neurologist telling us Evan was brain dead.

During this time, we learned that a vaccine was available that could have saved his life – if only we had we known about it, if only there had there been routine recommendations handed down from the CDC to physicians to families and teenagers.  But in 1998, there were no such recommendations.  The only young adults getting vaccinated were military recruits who lived in barracks; teenagers like Evan, living in college dorms (like barracks in many ways), remained unprotected. We were stunned and heartbroken that we’d never been told about the vaccine.

At that point my family decided that if we didn’t know about the vaccine, there were so many other families who did not know as well.  We made it our mission to educate others about meningococcal disease and its prevention, and thus the National Meningitis Association (NMA) was born. We have come so far, but there is still much to be done.

These days, the quadrivalent meningococcal vaccine (MenACWY) is strongly recommended by the CDC for age 11-12 and again at 16. Many schools will not allow students to come to class unless they provide proof they were vaccinated. Even more recently, the MenB vaccine, which protects against a fifth strain of bacteria that has caused most college cases and all college outbreaks in recent years, has become available. The CDC doesn’t include MenB in its highest level of recommendation but urges young people and their parents to talk to a healthcare professional about it. (The NMA advocates for a stronger recommendation on MenB and continues to raise awareness of the vaccine.)

Despite relatively greater awareness and availability of meningococcal vaccines, many people still don’t know anything about meningococcal meningitis. If they do, it’s likely they’re like I was – blissfully oblivious, only assuming it’s a disease that happens to other people. Many of those who need the meningococcal vaccines are adolescents and young adults headed to college.  They may feel invincible. Although this disease is rare, it is deadly, and if you haven’t been vaccinated it does not discriminate.

As I approach this 20-year anniversary, I am still devastated and always will be.  You can’t lose a child and feel otherwise.  I hope the NMA’s efforts have saved lives, so that Evan didn’t die in vain.

Evan once said to me when he was younger, that he wished he were a tree, because trees don’t die.  Evan – you weren’t a tree, you were a beautiful, terribly missed son and brother.  You will always be alive in our hearts.

David’s Story

1 Aug

Mother and advocate Olga Pasick shares the story of meningococcal disease’s impact on her family in this moving account originally posted on Two Peds in a Pod:

I wish I had known the importance of vaccination for meningococcal disease before it was too late for my son. Back in September of 2004, David was a happy, healthy 13 year old, who came down with flu-like symptoms one evening. He first felt cold, then spiked a high fever, and vomited throughout the night. In the morning we called the pediatrician to have him seen. Everything ached, and he needed help getting dressed. That’s when I noticed purplish spots on his chest and arms. I didn’t know how serious that symptom was. As soon as the doctors saw him, they knew he had meningococcal disease. He was rushed to the ER for a spinal tap and treatment. Unfortunately, the disease spread quickly and his organs failed. David died within 24 hours of first developing those flu-like symptoms from a potentially vaccine-preventable disease. Unbelievable… and heartbreaking.

Read the full blog post here.

CDC Public Meetings on Vaccine Schedule (A Personal Account)

14 Jul

By Lori Buher

The CDC is holding meetings throughout the country this summer to ask for public input about adding a recently approved meningococcal vaccine to the current recommended vaccination schedule for infants and toddlers.  We attended the meeting held in Seattle this week.  I was touched by the sincerity of the parents attending.  They want to protect their children, but many have doubts.  When our children were small, my husband and I did not question the childhood vaccination schedule.  We simply followed our pediatrician’s advice.  Today, some parents do not feel that same confidence in our medical professionals.   They have doubts; doubts that are fueled by the emotional debates going on throughout the country.

As the mother of a survivor of meningococcal disease, there is no question in my mind that the vaccine should be added to the schedule.  Carl was 14 when the disease attacked him.  The horrors he survived included amputations, months of painful skin graft surgeries, years of healing before he could begin to walk again.  Do I want every baby to be vaccinated against meningococcal meningitis, rare though it might be?  Of course I do.  I can’t imagine any parent of any child who has been a victim of meningococcal disease that does not believe in vaccination.  The challenge I saw clearly at the Seattle meeting is that many parents are afraid.  I stood up and told about our journey with this disease; others stood and shared their similar stories of grief.  Still others spoke out against vaccines, questioning their doctors’ advice and the CDC’s recommendation.  They are not convinced.

I respect their sincerity and their right to choose.  Yes, vaccination does carry some slight risk, but to deny our children the protection it provides is foolish.  Parents who have concerns should educate themselves, evaluate the benefits and risks and make the right decision:  vaccinate!

 

Lori Buher is a board member of the National Meningitis Association.  Find out more about NMA by visiting http://nmaus.org.

Taken Too Quickly: A Father’s Story

11 Jul

The other day a father who had lost his 19 year old son to bacterial meningitis called me to share his story.  The father’s pain was so raw, as it had just been four weeks since his perfectly healthy son died. This young man who died was a college student, worked as a manager of a donut shop, and volunteered with special education kids. He just had his braces taken off on a Monday, felt sick on Tuesday, went to the doctor on Wednesday, who sent him directly to the ER, where he died four hours later.  No time for goodbyes, no time to make sense of what was happening.

I hear too many of these stories.  Was the young man vaccinated?  No. Did the parents know about vaccination?  No.  I heard the pain and disbelief in the father’s voice.  In the four weeks since his son had passed away, the father has done extensive research on meningococcal disease, trying to understand this disease that swooped down out of nowhere to steal his son’s life. Yet still, he had so many questions.  How could this happen, and how did it happen so fast?

I don’t have the answers to his questions.  I only know that his son should have been vaccinated, and that everyone involved – health care providers, parents, schools, legislators – all of us need to do a better job to make sure this does not keep happening.

How many of our children need to die before every adolescent and young adult is routinely vaccinated against this disease?

My Thoughts As I Protect My Children

29 Jun

By Charlotte Moser

It’s that time of year—school’s out, summer’s here; it’s time for the kids’ annual physicals. In our family, yesterday was the day.  As we sat waiting for their names to be called, both of my kids showed traces of being apprehensive, but they knew what had to be done.  For my son, the most important parts were finding out how tall he is and getting the signature on his sports physical form. For my daughter, the most important part was simply getting done. For me, it was the vaccines that I knew were coming. My son was up-to-date, including having had the human papillomavirus (HPV) vaccine. But my daughter is eleven, so she was due for several vaccines—Tdap, meningococcus, and HPV.  Since one of my other hats involves understanding and explaining the science of vaccines, I knew how important yesterday was.  Pertussis outbreaks have been occurring throughout the country. HPV is typically transmitted later in the teenage years and meningococcus often occurs as kids become more social, sharing not only drinks on the sidelines, but bacteria and viruses that they may not have encountered previously.

As a mom, I would like to believe that even without a vaccine my children would not be affected by these diseases, but the reality is that we just don’t know who will be affected. Because of my job, I have probably talked to more families affected by vaccine-preventable diseases—either meeting them as members of important support groups who share their stories and give each other strength or simply in day-to-day conversations when I say what I do.  I’ve met moms whose children have died from meningococcus, Haemophilus influenzae type b, measles, chickenpox, pertussis, and influenza. I know people who have cancer caused by human papillomavirus, were hospitalized with rotavirus, recovered from shingles and survived polio. I’ve looked in their eyes and witnessed the depth of their pain, the strength of their passion, and the gravity of their concern as they work to spare others an experience they wish they too did not know.

Of course, sometimes when I say what I do, people become tense and don’t want to talk to me at all. I know they think that I am biased, and I guess I am. But not because I make a lot of money saying vaccines are important or because I am being told to say they are safe. I am biased because I have seen the ravages of these diseases. I have read the clinical descriptions and statistics; I’ve heard the sounds and the stories; I’ve seen the pictures. My fear is not that the vaccines will hurt my children, but that they won’t work. What if my child doesn’t respond to the vaccine? What if my child gets an infection that we can’t yet prevent with a vaccine? As moms, we can always find something to worry about—even those things which are statistically unlikely to happen or theoretical at best—but I have done the reading and asked the questions, and I can feel comfortable that I have done all that I can to protect my kids from the diseases that we are working to conquer. Now, I am waiting for vaccines to protect them from the wrong crowds, poor decisions, and any other bad thing that may happen to them. If only all parenting concerns were as easily fixed with a shot.

Charlotte Moser is the Assistant Director of the Vaccine Education Center at The Children’s Hospital of Philadelphia and co-author of “Vaccines and Your Child: Separating Fact from Fiction.”

To Vaccinate or Not to Vaccinate… That is the Question…

21 Jun

So many parents are having a difficult time with this question. For me and my family, it’s a no-brainer.  We lost our college-aged son 13 years ago to bacterial meningitis, because we did not know that a vaccine existed or was available.  Had we known, our son would have been vaccinated and would be alive today.

Can I go back and rewind the tape on these last 13 years?  Can I start over again?  Why didn’t I know about this vaccine, when so many other vaccines were listed on my son’s college-admission forms?

Parents with children today are so lucky, compared to our parents and grandparents.  Vaccines are medical miracles that have transformed the face of medicine.  Diseases like polio, measles, rubella and pertussis that once killed or maimed hundreds of thousands of children have been dramatically reduced or eliminated through widespread use of immunizations.  As a result, the United States has successfully conquered many of the most challenging infectious childhood diseases, regardless of families’ socioeconomic status.   However, we can’t let down our guard.  Diseases can make a comeback if people are neglectful about vaccinating based on an assumption that their children will be fine because everyone else is vaccinated.  It’s important for everyone to participate in vaccination programs.  We must keep protecting our children with vaccinations.

Vaccines save lives.  The meningitis vaccine could have saved my son’s life.  My son was a 20 year old college junior – honor student, pre-med, and pitcher on his college baseball team.  He was healthy, happy, and living his dream.  Would he have made it to medical school and become a doctor?  I think so, as his younger brother did, and their dream was topractice medicine together.  Would he have made it to MLB as a pitcher?  Who knows?  He had a wicked fastball, but that’s not what’s important.  What is important is what he was – a wonderful son and brother, who was loved more than I can even put into words, and he will be missed forever.

I can’t even begin to describe what life is like after you lose a child, and then to be devastated all over again when you find out that your son didn’t have to die.  There is no such thing as “closure” after losing a child.  You might not cry as much as you did in the beginning, but that hole in the heart will never heal.  You now live a different type of “normal,” one where there can be much joy from other children and grandchildren, but a life with a background sadness that never goes away.  You walk down the street and see people laughing, joking, having a great time.  For that parent who has lost a child, that will never be you.  There is just too much pain and emptiness to be carefree.

Vaccines save lives and protect our children.  I have confidence in the FDA regulation process that if a vaccine is licensed, it is safe.  I don’t understand parents who question the advice of the CDC and our country’s most brilliant children’s advocates.

I don’t want any other parent to be me, a mom who lost a child to a vaccine-preventable disease.

So, to vaccinate or not to vaccinate ….  You shouldn’t have to even think about the answer.