Parents PACK Personal Stories – Meningococcus

Parents PACK Personal Stories – Meningococcus

Two Mothers. One Mission — Saving Kids from Meningococcal Disease

Meningococcal disease, caused by Neisseria meningitidis, can affect people of any age; however, infants, adolescents and young adults are most at risk. Six types of meningococcal bacteria (A, B, C, W, X and Y) have been identified around the world.

Meningococcal bacteria can overwhelm an individual so quickly that the person can go from being completely healthy to dead in less than 24 hours. These bacteria can invade the lining of the brain and spinal cord or the bloodstream:  

  • Meningitis — An infection of the brain or spinal cord. Symptoms can include fever, headache, stiff neck, vomiting, exhaustion and confusion.
  • Sepsis — An infection of the bloodstream. Symptoms can include fever, chills, rash, low blood pressure, and dark purple spots on the arms and legs.

Often, those lucky enough to survive spend the remainder of their lives with permanent disabilities. However, the devastation caused by meningococcal bacteria can be prevented by vaccination.

Two different vaccines are available:

  • MenACWY protects against meningococcus types A, C, W and Y. This vaccine is recommended for all adolescents between 11 and 12 years of age.
  • MenB vaccine protects against meningococcus type B, and it’s recommended for all teens between 16 and 18 years of age. The vaccine is also recommended for those up to 23 years of age who were not previously vaccinated.

Both vaccines are required to be protected against the five types of meningococcus that most commonly cause disease in the U.S. Unfortunately, many parents don’t realize there are two types of meningitis vaccines and not all healthcare providers are proactively discussing both vaccines with their patients. That’s why two mothers have united to bring awareness to this very important issue.

Two mothers. One mission.

Patti Wukovits, Executive Director of the Kimberly Coffey Foundation, and Alicia Stillman, Director of the Emily Stillman Foundation, are two mothers who each lost a daughter to meningococcus type B before a MenB vaccine was available to protect them. Patti’s daughter, Kimberly, was only 17. Alicia’s daughter, Emily, was only 19. These mothers united in their mission to raise awareness of this deadly disease and the vaccines available to help prevent it. Together, they co-founded the Meningitis B Action Project so that no other parent would have to experience a loss like theirs. The Parents PACK team recently talked with Patti and Alicia about their daughters and their important efforts to educate other parents. We thank them for bravely sharing their stories with our readers.

About their daughters and their personal experiences

Patti

Kimberly was a funny person, vibrant, silly, full of life. Everyone just loved this girl, and she loved to sing. She would grab a mic; Karaoke time, she'd be the first one up on stage. She wasn't shy at all. If there wasn't a mic, she'd grab a mop. She just loved to perform.

Kim grew into a beautiful, beautiful young woman. And she knew what she wanted to do with her life. At 17 years old, she knew that she wanted to be a pediatric nurse. She wanted to follow in my footsteps as a nurse. Kim was a 17-year-old high school senior, and was looking forward to prom, was looking forward to graduation. She had this beautiful gold-laced prom dress hanging on her closet door, and she was ready to go. She was ready to start the next chapter of her life.

Listen to Patti as she recounts her family’s experience with meningitis B.

Alicia

Emily was my middle daughter, and she was the light of a room. When Emily would smile, from the time she was a little girl, Emily would smile not just with her lips turning up, she would smile with her eyes. She was expressive and jovial, and everybody loved to be around her. Her dream was to be on Saturday Night Live. And the truth of the matter is she was very funny, and she might've made it someday. But her father and I told her that she had to have a plan B. And so, her major in college was psychology.

Listen to Alicia as she recounts her family’s experience with meningitis B.

Why they chose to share their stories

Patti

I share Kim's story to help prevent another tragedy from happening. I couldn't protect my daughter Kimberly against meningitis B. There was not a meningitis B vaccine available in the United States at the time. But now there is in the United States, and I feel it's my duty; I feel it's my obligation to make sure that all parents know about it, that they know her story, that they know that now they can protect their children.

Listen to Patti talk more about her decision.

Alicia

I share Emily's story all over the world because on a very cold, snowy, awful day in February of 2013, I had to say goodbye to my beautiful, healthy 19-year-old daughter, hooked up to tubes and machines, the likes of which I will never forget. And I told her to go in peace, that it's OK, and that I would be her voice.

Listen to Alicia talk more about her decision.

About the Meningitis B Action Project

Patti

The Meningitis B Action Project is a nationwide educational and advocacy campaign. We educate all over the United States. We speak at medical conferences, hospitals and medical schools. We speak at colleges and high schools. We present to policymakers because that's a very important part of what we do. We speak at the local, state and national level.

The Meningitis B Action Project has become the educational arm of both of our foundations. And we have created many educational materials, brochures, posters that are hanging in college campuses and medical offices all across the United States. Our educational materials simplify the message that there are two separate meningococcal meningitis vaccines — MenACWY and MenB — necessary in order to be fully vaccinated against meningococcal meningitis.

So, through the Meningitis B Action Project, we encourage healthcare providers to have the conversation with their 16- to 23-year-old patients and their parents to talk about meningitis B, the risks of meningitis B, how it's transmitted, and how they can best prevent the disease.

We also speak with 16- to 23-year-olds and their parents and empower them with information, to have the conversation with their healthcare providers should they not bring up the conversation about meningitis B. It's so important that that conversation is had. Although we feel that the healthcare provider should be the one bringing up the conversation, we also know that isn’t always happening. That is why we want to make sure that parents and young adults have the information to bring up the meningitis B vaccine proactively.

What parents can do

Alicia

It's really important that parents know what vaccinations their children get. Even young adults as they start to migrate from a pediatrics practice to a family practice, it's really important that parents are aware that the meningitis vaccine that their children get at age 11 and then again with the booster vaccine at 16 or 17 protects them against the meningococcal strains A, C, W and Y. There is no protection included in this vaccine for meningitis B — that is a separate vaccination series.

Parents need to take that initiative and ask their medical provider: Has my child been protected against all serogroups of meningococcal meningitis that they can be?

Get more information about meningococcal disease

Q&A with Meningitis Survivor and Author Andy Marso

Andy Marso is a meningitis survivor and author. Recently, we were fortunate to have the opportunity to talk with him about his experience.

In your book, you said that having meningitis changed your life for the better. Can you elaborate on that?

It gave me this mission to prevent other people from going through what I went through. It gave me a great sense of purpose to not have others experience what I had, which was very traumatic and very painful and very real.

What was the most difficult part about your recovery?

The most difficult part was mentally accepting that the life I had previously was gone. I knew that I would get better physically only to some degree. My hands and my feet were not going to be the same. Fingers and toes weren’t going to grow back. My body changed in a very big way and my physical functionality changed as well. But (the hardest part) was accepting that life was never going to be as free and easy as it was before.

I knew I was going to have to work harder than everyone else just to do even the basic daily things in life. I went through the grieving process you would go through if you lost someone — the anger, the bargaining, depression, and getting to the final stage of acceptance. It wasn’t the physical challenges, which were plentiful of course, but it was having the emotional fortitude to accept that if I wanted to live independently and make something of my life, I was going to have to face those challenges head on. There wasn’t going to be a way to get around them. It was going to be hard work the rest of my life to adapt to everything, but I didn’t want to just give up. So accepting that was the most difficult part.

How were you able to accomplish that?

I’ve been to the Centers for Disease Control and Prevention (CDC) twice to testify in favor of a broader recommendation for the meningococcal B vaccine. That’s the kind (of meningococcal disease) I had. I’m personally passionate about getting broader coverage for that. I’ve spoken publicly about the need for college campuses to have their students vaccinated against meningococcal B. I went to the Missouri statehouse to testify there. I’ve been active in the policy realm and active within the community of survivors. I’m in the position where I can reach out and comfort and hopefully inspire a new crop of meningitis survivors who unfortunately contracted the disease, but fortunately lived through it, albeit with serious effects. I feel I can give them some sense of what’s possible for them even with the physical aftereffects.

Do you think the meningococcal B vaccine should be required before college attendance?

I think at this point we need it on college campuses and every student health center. It has to be available. My preference would be that the colleges require the meningococcal B vaccine the same as the quadrivalent meningococcal vaccine (ACYW-135). The B strain of the disease has the same awful effects — brain damage, lung damage, amputations, disabilities — it’s kind of nonsensical to require the quadrivalent vaccine, but leave meningococcal B vaccine unused. It’s in the best interest of universities to make sure students are vaccinated before they get to campus because you don’t want this bug on your campus.

An outbreak affects everyone, not just the victims, but everyone at the university — their families, employees. Once an outbreak occurs, then you have these hastily arranged, ad-hoc vaccine clinics and at that point, you’re in crisis management and not preventative medicine. Right now, my focus is making sure that at-risk university students are:

  1. Aware that they are not fully protected with just the quadrivalent vaccine
  2. Able to get the meningococcal B vaccine
  3. Required to get the vaccine before coming to campus

What about your advocacy efforts has surprised you?

The way this illness seems to hit the best and the brightest. And maybe that’s just the sample size that I have been exposed to. But it just seems like the people and the families affected by this are … so supportive and caring, and it’s very hard for them to understand how they can lose a loved one within 24 hours.

I think what’s been the most impactful is when I started talking to families who have lost someone to this, and they all asked me the same question — how much pain were you in? And so I realized in a lot of cases (meningitis) hits so quickly that parents and loved ones aren’t able to get there to say goodbye. So they want some sort of insight as to what (their loved one) was going through. There is so much pain for those families behind that question and that’s the main reason I do what I do because I don’t ever want to be asked that question again. Of course I am happy to answer it to the best of my abilities because they deserve that. But that question — “How much pain were you in?” — it’s such an emotionally loaded question that I don’t want anyone else to ever have to experience.

Do you have any memorable moments from your time doing advocacy work?

I have moments like a couple of months after getting out of the hospital, we hosted a news conference. I was still bandaged from the surgeries I had. I said unequivocally colleges should make this shot mandatory. I remember feeling this very powerful sense that I was doing exactly what I was intended to be doing at that moment. That was really gratifying and one of the first public things I had done.

And then there are defeats. We had a bill to require the vaccine like the CDC recommendation indicates. I went to testify to the (Nebraska) legislature and the bill got filibustered. So there are moments when you feel like you failed. What more could you have done to make those people understand and change their minds? Every time I read about someone in the news who has come down with this thing, it feels like, in some sense, a personal failure. So that’s that bit of feeling like if I had done more, it wouldn’t have happened.

There are moments when you feel you could be doing more. Or there are moments when a law is passed that you know you’re on the right track. You know you’re doing good work, and eventually we’re going to get this thing wiped out.

What opportunities has your illness provided that you might not have had if you did not have meningococcal meningitis?

Too many to really enumerate. My life before was comfortable, but it didn’t have the same meaning or purpose that I have now because I survived the illness:

  • The opportunity to stand in front of the CDC and tell my story
  • The opportunity to go to (state legislatures in) Jefferson City, Missouri, and Lincoln, Nebraska
  • The opportunity to speak at public health conferences in New York and Colorado
  • The opportunity to be a real resource to people who are going through very difficult circumstances of their own — meningitis, burns, amputations

Those are very gratifying and those are all opportunities that I wouldn’t have if I didn’t go through that struggle. The struggle made me a stronger and better person. It made me more empathetic. It also gave me a platform to make sure other people don’t go through this, but also to show people who are going through this that there is a path out to the other side.

Additional resources

Back from brink of death, man lives life to fullest

The following article tells the story of Adam Bencsik who survived after having meningococcal meningitis, but whose daily life has since been affected. It is reprinted with permission of the author Amanda Cregan and originally appeared in the Bucks County Courier Times on September 14, 2009.

By: Amanda Cregan
The Intelligencer

Adam Bencsik doesn't spend any time thinking about what lies ahead of him.

The 29-year-old Quakertown man takes things day by day.

It's a philosophy he's had to live by since that fateful night at the age of 15.

Waking up late at night, Bencsik got out of bed to use the bathroom and suddenly felt strange pain in his legs and found blue welts across his chest.

Hours later, Bencsik was in and out of consciousness as his parents rushed him to Grand View Hospital's Emergency Room, where he was quickly diagnosed with bacterial meningitis.

Days turned into weeks as the Pennridge High School 10th-grader fought to hang onto life in a Children's Hospital of Philadelphia hospital bed. The teen was even put into a medically-induced coma.

Bacterial meningitis is a rare, but often deadly disease. Often beginning as a stomach bug or flu, it can go on to kill terrifyingly fast.

It is one of the few infections in the United States where someone can feel fine in the morning and be dead by night.

About 15 percent of people who catch the germ die, and one in five survivors suffers permanent disabilities, including brain damage, deafness or amputated limbs.

The government now recommends high school teens and college freshman be vaccinated against the infection.

"For three weeks, they didn't know if I was going to live or die. It was pretty bad," said Bencsik.

He doesn't remember much about the months that followed, but does recall the doctors scheduling the surgeries to amputate his legs below the knees, explaining the bacteria had already shut down blood vessels to parts of his limbs.

Doctors later removed his fingers, too.

It was then that Bencsik decided that it wouldn't do any good to become angry or depressed.

He knew he needed to take everything in stride.

"I kind of just accepted it for some reason," he said of the amputations.

Nearly 15 years later, it's a day-by-day motto he still follows.

"You have to be able to adapt. Nothing is ever as you plan," said Bensik, who graduated from Pennridge in 1998 and went on to graduate from Edinboro University of Pennsylvania, where he was named MVP and took home a national championship win with his wheelchair rugby team.

You can even catch Adam playing wheelchair rugby for a brief second in a current Gatorade TV commercial featuring a montage of intense sports competition moments.

Adam Bencsik and his high-school sweetheart, Leigh, are approaching their sixth wedding anniversary.

When he's not working full time as manager of Staples' copy center in Souderton, he's busy keeping up with his 1-year-old daughter, Kinsey.

Adam is not the type of guy that will tell you how hard he's worked or complain about how much he's had to overcome, said Leigh.

"I don't think he pities himself at all," said Leigh.

At first glance, Staples manager Kevin McMenamin wasn't sure how Adam would handle the day-to-day work.

"When Adam showed up in the wheelchair I thought, 'Man, how's this guy going to run the copy center?'" said McMenamin.

Twenty minutes later, he didn't even notice Adam's disability, he said.

"Once you get to know him, everyone realizes he's just one of the guys. It's no longer a handicap."

And after three years of working together, McMenamin says he's learned to never doubt Adam's ability.

"He is very independent. He refuses to park anywhere near a handicapped zone, and he takes no advantage of the fact that he has special privileges as a handicapped individual," he said.

"What he has been able to do with it, I imagine is far and above than someone with a similar disability. He's an overachiever."

As for what the next 15 years might bring, Adam's never given it much concern.

"I don't really think real far in the future," said Adam. "In my family, we just assume that we'll be able to overcome the obstacles, and it's worked so far. It's not worth dwelling on the bad stuff."

Learn more about meningococcus and the vaccine that prevents it.