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What Parents of Every Teen Should Know About Meningitis

The most important thing parents of teens need to know about meningococcal disease is that it can be very serious.  And by serious, we mean debilitating and often deadly.

Even with prompt medical treatment, about 1 in 10 people with meningococcal disease will die from it. Of those who survive, about 1 to 2 will have permanent disabilities such as brain damage, hearing loss, loss of kidney function or limb amputations.

The best thing parents can do to protect their children from meningococcal disease is to get them vaccinated against all of the preventable forms of the disease.

 What causes meningitis and meningococcal disease?

Meningitis refers to a swelling of the protective membranes that cover the brain and spinal cord.   While meningitis is commonly caused by a bacterial or viral infection, it can also be caused by injuries, cancer, certain drugs, and other types of infections.

Meningococcal disease is specific to any illness caused by the bacterium Neisseria meningitidis (also referred to as meningococcus or meningococcal meningitis).  These types of infections can cause meningitis, but can also cause bloodstream infections (known as bacteremia or septicemia).

It’s possible to have meningitis without having meningococcal disease, and it’s possibly to have a type of meningococcal disease that isn’t necessarily meningitis.  The specific cause of illness is important to identify because the treatment differs depending on the cause.

  • Bacterial forms of meningitis can be extremely dangerous and fast-moving and have the greatest potential for being fatal. The long-term effects of bacterial meningitis can include multiple amputations, hearing loss and kidney damage. Many, but not all, forms of bacterial meningitis can be prevented by vaccination.
  • Viral meningitis has similar symptoms to bacterial meningitis, but for the most part is neither as deadly nor as debilitating. There is no specific treatment available for viral meningitis, but most patients fully recover over time.
Meningococcal Disease Facts

Who is at risk?

Read more…

Stories of Polio, Meningitis, HPV, Hepatitis and Pertussis Top 2016 List

December 28, 2016 Leave a comment

Every Child By Two’s online platforms have reached over 11 million people with evidence based vaccine messaging in 2016.  As we look back at the record number of views and shares there have been on Shot of Prevention blog posts this past year, we’re especially grateful to our blog readers, contributors and subscribers.  

Whether you have shared a post, shared your story, or shared your expertise, know that our growth and success would not have been possible without your support.  Thanks to you, people are referencing our content before making important immunization decisions for themselves and their families.  In these final days of 2016, we hope that you will revisit these top five posts from the past year and share them with others in your social networks.  Together, we can continue to engage more people in these important immunization discussions.

 

1. My Polio Story is an Inconvenient Truth to Those Who Refuse Vaccines


Judy Post Polio with SisterIn 1949, Judith contracted polio along with 42,000 other people in the U.S. Judith survived five months in the hospital and multiple surgeries, but sadly 2,720 people died from polio that year.  As Judith bravely shares her story, she explains that it represents an inconvenient truth to people who are in denial about the risks of polio. She is continually shocked by people who refuse vaccines, who refuse to believe she ever suffered with polio, or who actually believe the polio vaccine is part of a government or “big pharma” conspiracy.  By sharing Judith’s story we hope to encourage continued polio vaccination and support of polio eradication worldwide and applaud people like Judith who are courageous enough to speak out in support of vaccines.  To read Judith’s story, click here.

 

2. How My Vaccinated Daughter Died From Meningitis and What I’m Doing About It  


EmilyStillmanEmily Stillman was pronounced brain-dead just 30 hours from the onset of a severe headache.  What they though was a migraine turned out to be meningococcal disease. In this post Emily’s mother Alicia explains that although Emily received a meningococcal vaccine, the MCV4 vaccine she received only protected her against meningococcal serogroups A, C, W and Y.  It did not protect her against serogroup B, which is what caused Emily’s death.  Since Emily’s death, a MenB vaccine has been approved for use.  However, most parents still don’t know it exists and therefore, most students are still not protected.

As the Director of The Emily Stillman Foundation, Alicia Stillman helps educate people about the importance of “complete and total” protection against all serogroups of meningococcal disease.  This means ensuring that teens and young adults receive both meningococcal vaccines; the MCV4 vaccine that protects against serogroups A,C, W and Y, as well as a MenB vaccine series.  To learn more about fully protecting our youth against meningococcal disease, read Alicia’s guest blog here.

 

3. Questioning Whether to Get Your Child the HPV Vaccine? Read This


hpv-fact-vs-fiction-series-1Although the HPV vaccine is one of the most effective ways we have to prevent numerous types of cancer, it is still being grossly underutilized.  As a result of persistent but inaccurate myths circulating on the internet, some parents are more fearful of the HPV vaccine than the human papillomavirus itself.  This is causing them to refuse or delay HPV vaccination for their children.

In this popular blog post, we highlight ten critical facts that address the most common misconceptions about HPV infection and the vaccine that can help prevent this very common infection. To learn more, be sure to read the post here.

 

4. Understanding Why Your Baby Needs a Hepatitis B Vaccine at Birth  


 

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There are many misconceptions about hepatitis B and how the infection is transmitted.  Because of this, many parents don’t consider their children to be at risk of infection and so they question the need for a hepatitis B vaccine at birth.  In this post, the Prevent Cancer Foundation explains the connection between hepatitis B and liver cancer and discusses ways in which infants and children can unknowingly contract hepatitis B.  Their Think About the Linkeducation campaign suggests that vaccinating infants before they leave the hospital is a critical first step in protecting your newborn from a virus that can lead to cancer later in life.  To learn more about Hepatitis B and the vaccine to prevent it, click here.

 

5. Barbara Loe Fisher is Right.  She’s Also to Blame. 


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Back in the 1980’s, Barbara Loe Fisher claimed that the whole cell pertussis vaccine (DTP)  was dangerous and causing too many adverse events.  Her complaints prompted the development of the more purified (acellular) pertussis vaccines that we use today; DTaP for infants, and Tdap for adolescents and adults. While studies have shown that these newer vaccines are not as effective as the old whole cell pertussis vaccine, they are the best protections we have against the dangers of pertussis.

Unfortunately, those who need protection the most are those who are too young to be vaccinated.  Infants are at high risk of severe complications from pertussis, to include hospitalization and death, but babies don’t begin receiving pertussis vaccine until two months of age.  After newborn Calle Van Tornhout contracted pertussis from a hospital nurse at birth, she died at just 37 days of age.  Callie’s death has had her home state of Indiana considering a bill that would mandate pertussis vaccination among health care workers.  But Barbara Loe Fisher is opposed to that as well.  To read more about the history of pertussis vaccines, click here.

 

If you have suggestions for topics you would like us to address in 2016, or you would like to contribute a guest post for publication, please email shotofprevention@gmail.com.  

Don’t miss any of our new posts.   Subscribe to Shot of Prevention by clicking the link at the top right of this page.  You can also “Like” our Vaccinate Your Family Facebook page to receive updates on important immunization news and join in our online discussions.   

Thanks again for your continued support and best wishes for a happy and healthy new year!

How My Vaccinated Daughter Died From Meningitis and What I’m Doing About It

February 2, 2016 8 comments
This is a guest post, written by Alicia Stillman, Director of the Emily Stillman Foundation.  One of the missions of the Foundation is to raise awareness of meningococcal disease and the various vaccines that are now available to prevent it.    

February 2, 2013 my life changed forever.  I was told my beautiful and healthy nineteen year old daughter no longer had any brain activity, and that she would die.  Those words will forever haunt me.  There is no preparation, no training, and no practice for what was to come.  The loss of a child is like none other.  It is the wrong order. When you lose a child, a piece of you dies as well.

EmilyStillman

Emily was a sophomore at Kalamazoo College when she tragically contracted bacterial meningitis.  On February 2nd, 2013, Emily passed away with her family by her side.  Emily was able to donate 6 of her organs to 5 recipients, along with tissue and bones to countless others.

On January 31, 2013 my middle daughter Emily called home from college, and mentioned she had a headache.  I thought she was possibly coming down with the flu.  She thought it may be from lack of sleep.  We decided she would take Motrin and go to bed.  Several hours later she woke up to increased pain and was taken to the hospital where she was treated for a migraine.  It was not until hours later that the medical professionals realized they may be looking at meningococcal disease, and performed a lumbar puncture to confirm.

The entire two hour drive to the hospital I begged the medical professionals to double check the results.  Since I knew my daughter had been vaccinated against meningitis, I did not believe it was possible for her to have that disease.  I feared that something else would go untreated, and I wanted them to heal her.

When I arrived at the hospital, Emily was already unconscious as they prepared her for a craniotomy to relieve the swelling in her brain.  When the nurse took me to see her, she asked if I wanted them to call clergy.  That was the first time I actually realized the seriousness of this disease.  I did not understand how this could be happening.  My daughter only had a headache.  She was vaccinated.

Within 30 hours from the onset of her headache, my daughter was brain dead.  Her life was over.  We decided Emily would want to be an organ donor.  She was able to save five lives with six organs, and countless others with her bones and tissue.  She was a hero.

StillmanFamily2As I said goodbye to my sweet daughter in that hospital bed, I made her a promise.  Read more…

Surviving Meningitis: Like a Piece of Art, My Body Tells A Story

December 15, 2015 1 comment
This guest post has been written by meningitis survivor Samantha Bennett.

I have been an artist most of my life. Like a piece of my art, my body tells a story. My story is drawn on my face, it’s been stamped on my arms and legs. My hands are pieces of art by themselves.

Sam Bennett Studio Fix 2015

My entire life, people have been asking me “What happened to you?”

As a little girl, I would explain my scars— without much detail, I’d just simply say that I was sick when I was a baby. It was usually my mother that had the courage to explain why I had missing fingers or why I limped. Or why my face had scars. It wasn’t until I had become a mother myself that I learned how much my mother had been through for me. Having a family helped me see that telling our story could make a difference in other parent’s lives— maybe even save people’s lives.

What happened to me?

Sam Bennett baby pic

I had meningococcal disease. I rarely call it “meningococcal disease” because people draw blank stares when I say it. It’s also known as bacterial meningitis, but even then not a lot of people know much about it. My mom had taken me for baby photos the day before the word meningitis was introduced to my family. We still have the photo— a chubby, happy, healthy 9 month old baby posing for a very 70’s styled baby picture. That picture tells a thousand words now. The day after taking that photo, I was hanging on for my life. One minute, I was a healthy baby and within 24 hours I was the sickest baby in the hospital. Meningitis struck fast.

My symptoms started like a teething baby with a fever, but within hours the fever worsened and I had a weird purplish spot that appeared on my arm.

Sam Bennett Baby Picture 2It was time to go to the hospital. Turns out, the appearance of that weird “spot” was what saved my life. That’s “the rash” one of the dangerous signs of meningococcal disease. The disease ripped through my infant body fast. As I hung on for life, a team of doctors worked hard to save my arms and legs, even parts of my face. The hospital would become a place that I would be very familiar with for the rest of my life. Meningitis left my body covered in scars. I lost half of my right foot, I lost parts of my fingers, my face has undergone over 25 reconstructive surgeries to correct the damage from the disease.

Recovery from meningitis was not easy, but the healing from many surgeries lead me to be the artist I am today.

As a little girl recovering from surgery, I would pass time by drawing. My hands were not perfect, but creating art was something that came easy to me. My meningitis surgeries, my hospital visits and artwork have followed me much of my life. I knew that creating artwork with missing fingers made me a bit different, but I had no idea that my art would someday give my scars a voice to help parents and I could use my art as a platform to educate others.

I feel like every person needs a moment in their life that defines who they are, mine came to me when I became a new mother.

Sadly, my introduction into motherhood wasn’t the best. My husband and I lost our first baby at 2 days old. There I was leaving the hospital yet again in my life, but this time being strong for myself and my husband. My heart changed the day I became a mother and my courage grew. I heard my entire life that it was a miracle I survived a deadly disease as a baby. Although our loss was not related to a disease, nothing became more Nolan and Archer Bennett 7-23important to me than to spare other parents heartache.

Today, we have two adorably wild little boys— that I am happy to report have been vaccinated to protect them from meningococcal disease. I am a professional artist and a spokesperson with the National Meningitis Association. I proudly use my artwork as a platform to speak out about the dangers of bacterial meningitis and to educate other parents about the importance of vaccination.

I was excited to learn that Every Child By Two has expanded their mission to protect individuals from preventable diseases throughout the life span with their  Vaccinate Your Family program.

Unfortunately, about 1,000 -2,600 people get meningococcal disease each year in the U.S. and 10–15 percent of these people die. Of those who survive, about 1 in 5 will have permanent disabilities such as brain damage, hearing loss, loss of kidney function or limb amputations.

On the new Vaccinate Your Family website, there are several places to find information about protecting yourself and your family from meningococcal disease with the following vaccines: Read more…

Meningitis Survivor Advocates for MenB Vaccine

February 26, 2015 2 comments

My name is Jamie Schanbaum and I am a meningitis survivor.

The year before Jamie was hospitalized with meningococcal disease, she was a high school graduate with great aspirations for the future.  No one could have predicted how her life would change.

The year before I was hospitalized, I graduated high school with great aspirations for my future. No one could have ever predicted how my life would be changed by meningococcal disease.

I’m here to tell you that meningitis is not only life changing, but it is deadly. In 2008 I was diagnosed with meningococcal septicemia, which left me with serious life weighing decisions.  Within 14 hours from my first symptom, I was told that I had a 20 percent chance of surviving.  Then I was told that I was going to have to have some of my limbs amputated.   At the age of 20, my life had been average.  But within hours it transitioned to detrimental.  Seven months later, I finally stepped out (or more so, wheeled out) of the hospital.  I was alive, but I had lost the bottom half of my legs and all of my fingers.

There is no way anyone could have predicted that this would be my life.  I had so many expectations for the future before I got meningitis, and suddenly all that had changed.  I left the hospital with never-ending doubts of what my life would be like.  I’m now 26, and every day I live with the consequences of meningitis and the fact that I was not vaccinated.

That is why in 2009, my family and I became instrumental in educating the public about the dangers of meningitis and advocating for new Texas legislation that would require college students, living in public and private facilities, to get vaccinated.  Then in 2011, we worked to amend the bill so that all college students in the state of Texas would be required to get the meningitis vaccine before enrolling in classes.  I am honored that ever since The Jamie Schanbaum & Nicolas Williams Act was enacted, the number of meningitis cases in the state of Texas has continued to decrease.  Texas was the first state to implement this law, and I am hopeful that other states will follow.

Today we have an opportunity to s562561_10150765439539076_304512202_nave even more lives, and spare others from suffering the same permanent consequences as I have.  This week the Advisory Committee on Immunization Practices (ACIP) will consider whether to recommend the newly approved serogroup B meningococcal vaccine.   The current meningitis vaccine that children are recommended to receive between ages 11-12, and then again with a booster at age 16, hasn’t been 100% capable of covering all five strains of meningitis.  The serogroup B strain, which can now be prevented with this newly approved vaccine, is a very dangerous strain and we’ve recently seen an increase in the number of cases on college campuses across the U.S.  Now more than ever, we need to seize the moment and make sure the public is protected from as many forms of meningitis as possible. Read more…

How Meningitis Nearly Killed Me, Then Changed My Life for the Better

June 26, 2014 31 comments
Andy and his roommate visit Gooseberry Falls just days before he falls ill.

Andy and his roommate visit Gooseberry Falls during spring break of his senior year of college.  This is one of the last pictures he took prior to contracting meningitis.

By Andy Marso

I occasionally look at pictures of myself on a spring break trip in 2004, about a month before I almost died of a meningococcal infection.

I was a senior at the University of Kansas at the time and I brought my Brazilian roommate home to show him what spring break is like in Minnesota. There are pictures of him, with his shoulders hunched against the cold, and me and another friend in front of a frozen Gooseberry Falls, the ice and snow stubbornly refusing to cede the ground it had held for months just because the calendar had turned to March.

They are the last pictures I have been able to find in which I still have four normal limbs.  They are the last pictures of a different Andy Marso, one who was carefree and naïve and didn’t realize how quickly he could lose the life he loved.

Sometimes, when I look at those pictures, there are things I want to tell that Andy.

MarsoBurnUnitArmResizedI want to tell him to turn and run up that frozen waterfall, to leap nimbly from one rock to the next, because some day he won’t be able to.

I want to tell him to flex those fingers poking out the sleeves of his fleece hoodie and marvel at all of the tiny, delicate muscles, nerves and joints that can move in ways that no machine can fully duplicate.

I want to tell him about Neisseria meningitides, the tiny bacterium that will soon invade his bloodstream.

I want to tell him that within weeks he will go to bed thinking he has the flu and by the next night he will be in intensive care, in a medically-induced coma, with his organs failing and his parents praying he will live.

MarsoBurnUnitLegsI want to warn him that when he wakes up from that coma, he will face suffering worse than any he has ever imagined for himself. That for months, medical professionals searching for living, bleeding tissue will slice layer after layer of dead flesh from his arms and legs until his bones and tendons are exposed, but they will be unable to save his toes and most of his fingers.

I want to tell him that in losing that, he will gain new purpose. Read more…