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Meningitis B and Your College Student: Preventing the Call

This important post is being published to highlight Preteens & Teens Week during National Immunization Awareness Month.  Please take the time to talk to your child’s healthcare provider to make sure he or she is up-to-date on all recommended vaccines. (A version of this post was originally published on Shot of Prevention on February 14, 2018.)

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Emily and the Stillman family after her high school graduation.

Emily was a 19-year-old college student when she called home complaining of a headache. Thirty-six hours later, she passed away due to serogroup B meningococcal disease (also known as meningitis B). Emily was able to donate six of her organs, together with bones and tissue, to save the lives of five others.

Emily’s mother, Alicia Stillman, who graduated from Arizona State University, returned to Arizona after founding The Emily Stillman Foundation to honor her late daughter’s life. She shared the story of how Emily contracted meningitis B and her family decision to donate Emily’s organs. She also explained the work she is doing to help educate others about the availability of serogroup B meningococcal vaccines (MenB) in the United States and to encourage organ donation. She spoke with Debbie McCune Davis, Director of The Arizona Partnership for Immunization (TAPI), who is leading the effort to increase awareness of the approved vaccine and who is working with the universities in Arizona to promote the Off to College education campaign.

Together these two women share a message of hope, as they work to save lives and prevent serogroup B meningococcal disease by educating parents, students, educators and medical professionals across Arizona and the nation.

Alicia: I always felt I was living a blessed life. I enjoyed motherhood. I had three beautiful children, a wonderful husband, and a successful career. I believed I was doing everything right to raise healthy, independent children, as I sent each one off to college.

My middle daughter Emily had a fabulous first year away at a small liberal arts college in Kalamazoo, Michigan. In 2013, she was well into the second semester of her sophomore year when she called home one evening, complaining of a headache. Thinking it was from lack of sleep, I advised her to take some ibuprofen, and to touch base with me in the morning. Little did I know that was to be the last time I would ever hear my Emily’s voice.

The call the next morning wouldn’t come from my Emily, but rather from the Dean of the college. She told me my daughter had been admitted to the hospital during the night with bacterial meningitis, that she was very sick, and I needed to get there as soon as possible. I remember insisting that this was not possible because even at that time, I knew she had received “the meningitis shot”.  In fact, I even remembered that before she left for college, she had received a meningitis booster. What I did not yet know at that time was that the vaccine she had received (MenACWY) only protected her against 4 of the 5 common serogroups of meningococcal disease. I had no idea that there was a strain (serogroup B) she was not protected against because a vaccine for that strain was not even available in the United States at that time.

Less than 36 hours later I said goodbye to my baby. My beautiful girl that I had promised to always protect and take care of was gone. As I said goodbye to her on that cold February morning, I told her that I would be ok…and that I would figure this out.  I would make sure this could not happen to other people.

Debbie: Stories like Alicia’s couldn’t be prevented in the U.S. when Emily Stillman was infected with meningitis B and lost her life to the disease, but they are today. In October of 2014 and January of 2015, the FDA approved licensing for two different vaccinations to protect against serogroup B meningococcal disease. Soon after that, the CDC’s Advisory Committee on Immunization Practices (ACIP) recommended that college students talk with their doctors about the meningitis B vaccine (MenB).

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Off to College TAPI’s campaign to educate college students and their parents about vaccinations needed before school.

In Arizona, our Board of Regents (the governing board of our state university system) took quick action to recommend all incoming freshmen get the vaccine.  There had been outbreaks in the PAC 12 schools and Arizona wanted to promote healthy campuses. We, at TAPI, worked with the universities, their medical directors and all of our professional medical organizations including osteopaths, pharmacists, nurses, and pediatricians to put forth a unified message and raise awareness.

Alicia: I live my promise to my Emily every single day with my work at The Emily Stillman Foundation. Before the vaccine was approved in the U.S., I discovered the vaccine was available in Canada. We took busloads of families across the Detroit/Windsor border into Canada to get the MenB vaccine. We met with the Food and Drug Administration (FDA) and many members of Congress to urge the fast tracking of the licensing process. I testified at the CDC and encouraged ACIP to grant a firm recommendation to protect our adolescents and young adults. I set up vaccination clinics locally to provide the vaccine before medical practices were willing to hear about it. I speak nationally, working with colleges, medical practices, and parents to raise awareness to this hideous disease, its symptoms, and the vaccinations now available to prevent it. I won’t stop until the MenB vaccine is on the required list, and is available to all people.  Only then will my promise to my Emily be fulfilled. 

Debbie: Today, we at TAPI are taking it a step further…we don’t want kids to wait until they’ve moved into their dorms to receive their vaccination. We are working with high schools, parents groups, physicians, athletic departments and more to promote Vaccinate Before You Graduate here in Arizona. We want this to become part of the college prep routine—take your college entrance exams, turn in your transcripts, apply for scholarships, choose your school, order your cap and gown and vaccinate.

As mothers and as experts – one from a heart-breaking loss, and one as a professional who works tirelessly to prevent disease – we urge you to enjoy these moments with your child.  However, as you are giving them that final send off, smoothing the bedding on their dorm bunk, stocking snacks and toiletries, telling them to study hard and have fun (but not too much fun), asking them to be safe, be sure to also give them the tools to stay healthy. Make sure they have their boosters, that they are up-to-date on all vaccination and be sure your health professional has given your child protection from all strains of meningitis, including meningitis B. If your child has already started that journey and is off to college, check with the student health services at their school for information about vaccine availability on campus. Do it for your child, do it for yourself and do it for Emily.

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Watch this video from the Meningitis B Action Project to learn more about MenB in 90 seconds

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Alicia Stillman lives in West Bloomfield, Michigan with her husband of 29 years, Michael. In addition to her angel daughter Emily, she has two live children – Karly, 25, and Zachary, 21. Alicia holds an MBA in Management Accounting, and is the Accounting Director for a multi-state law firm. She is the Co-Founder and Director of The Emily Stillman Foundation, founded in 2014 in memory of her late daughter Emily. The Foundation has a trifold mission to raise awareness for and encourage organ and tissue donation, to educate about meningococcal disease as well as all vaccine-preventable diseases, and to advocate globally for all health and wellness issues. Most recently, Alicia partnered with Patti Wukovits to co-found the Meningitis B Action Project. Alicia can be reached through the Foundation at emilystillmanfoundation@gmail.com.

McCune DavisDebbie McCune Davis has served as Director for The Arizona Partnership for Immunization, better known as TAPI, since February 1996. She was an elected member of the Arizona Legislature, serving from 1979 until 1994 and again from January 2003 until her retirement in January 2017, serving in both the House of Representatives and the Arizona State Senate. In her local community Debbie serves on numerous committees and task forces, working to improve the health status of women and children in Arizona. She has established a reputation for being a knowledgeable advocate for maternal and child health and childcare issues. In 2012 she was recognized for her advocacy by the Children’s Action Alliance in Phoenix and Every Child By Two in Washington, DC. Debbie also served on the Board of Directors of the American Immunization Registry Association and she volunteers her time as a member of the planning committee of the National Conference on Immunization and Health Coalitions. She is married to Glenn Davis and has a blended family of 5 children and 3 grandchildren. More information about TAPI may be found at www.whyimmunize.org.

Learn More

Vaccinate Your Family

National Meningitis Association

Meningococcal Vaccination for Preteens and Teens: Information for Parents (CDC)

CDC’s Recommended Immunization Schedule for Preteens and Teens (En español)

 

Remembering Nadja, another precious child lost to measles

July 11, 2018 4 comments

By Erica DeWald

Europe has been in the midst of a measles outbreak since 2016 which, so far, has resulted in 48 deaths.  Unfortunately, many people are at risk, including children who are not yet old enough to receive the vaccine and those with compromised immune systems.

One mother in Serbia has chosen to share the story of losing her young daughter, Nadja, in the hopes that it will encourage other parents to vaccinate their children against measles and other vaccine-preventable diseases.

Nadja

Nadja was diagnosed with an autoimmune condition when she was a year old. Her hypoparathyroidism, due to hypoglycaemia and hypocalcaemia, meant she could not keep her calcium levels high enough through simple oral therapy. She needed regular IV injections at her local hospital. The condition also made it harder for Nadja to fight infections and placed her among the high-risk group of people who cannot be vaccinated. She instead relied on those around her to protect her from vaccine-preventable diseases.

In January of this year, Nadja was admitted to the hospital but there was no room in the isolation unit. She ended up sharing a room for three days with another liNadja while hospitalizedttle boy. Her mother, Dragana, later learned the boy had been diagnosed with measles. Dragana recounted,

“At the moment, my world collapsed, I knew that she would get it, but again in the depths of the soul I hoped she will not.”

Three days later, measles caused Nadja to develop a high fever and she fell into a coma from which she never awoke. Despite multiple attempts and two resuscitations over the course of three months to stabilize Nadja, she died on April 4 from heart failure.

Measles is not just a threat in Europe. Here in the United States we are seeing increasing outbreaks of the disease. In the past week health officials have reported confirmed or suspected cases in Oregon and Washington as well as New Jersey. Since 2014, over 1,000 cases of measles have occurred in the U.S. placing communities at serious risk. That’s because it’s one of the most easily spread viruses we know of, and as many as 1 out of every 20 children with measles will get pneumonia, and about 1 child in every 1,000 who get measles will develop encephalitis. As a result, the disease still kills hundreds of thousands of children each year around the world.

Dragana has begun a Facebook page to remember her daughter and to warn others of the deadly consequences of measles. Please take a moment to follow her page and share it with your friends and families in remembrance of Nadja.

Have questions about the dangers of measles or what you can do to stop the spread of outbreaks?

 

Nurses, Teachers and Mothers All Influence Immunization Uptake

May 11, 2018 2 comments

This week is not only National Nurses Week, but it’s Teacher Appreciation Week and soon to be Mother’s Day.  As I sat down to acknowledge nurses, teachers and mothers, one person came to mind – Mary Beth Koslap-Petraco, DNP, PNP-BC, CPNP

32191415_810903039094009_6826616278065610752_nIf you ever get the chance to meet Dr. Koslap-Petraco, there are three things you will immediately recognize.

She is a leader among nurses.

She is incredibly passionate about immunization education. 

And she adores her family – especially her mother.

 

A few years ago, Dr. Koslap-Petraco shared the story of how her mother’s life was forever altered by polio.  In honor of her mother, Mildred Bliss Koslap, who recently passed away at the age of 98, I want to share her story once again.  The Koslap family story is a reminder of the role that mothers, nurses and teachers have in ensuring that people of all ages embrace immunization as a way to prevent debilitating diseases.

Dr. Koslap-Petraco begins the story by explaining that it was the summer of 1923, and her mother was only three years old:

“During that period in our history, it was common for families like mine to escape the heat of New York City and travel upstate to cooler weather.  That summer, the family chose to reside in a guest house in Utica, NY.  My mom arrived to Utica a fully-functioning and fun-loving child, but on a subsequent Sunday morning, she remembers not being able to get out of bed due to paralysis on the right side of her body.  She was able to scream out for help initially, but her voice consistently diminished throughout the day, only to disappear for a week.

Her father called for medical assistance, but during this time in Utica, people strictly followed what were known as Blue Laws—forbidding any type of work or major exertion to be made on Sunday.  With time, my grandfather was able to convince a kind-hearted Jewish doctor to come over.  He instantly recognized my mother’s condition as polio.  The periodic massages and other treatments that my mother had to undergo were hassle enough for a young child, but the emotional strain for her was even worse.

After a short time, her siblings were not allowed to play with her, for fear that they might come down with polio themselves.  And when my mother—born left-handed—entered school, she was constantly punished by the nuns who directed her to write using her right hand.  What they did not understand was that my mother had lost the ability to grasp objects with this hand as a result of her polio.  To this day she remains able to hold nothing more than a glass of water with her right hand.

To me, it’s important that I never lose sight of the experiences like this that my mother and her family had to endure that one hot summer in 1923.  What’s even more important is that I acknowledge the fact that polio is no longer a significant threat to the health of people in America.  Science and research have delivered so much to us, including the means to eliminate the threat of major preventable diseases like polio.”

polioMildred appears to have had a great life, raising three strong, successful and independent daughters and living to know not only five grandsons, but seven precious great-grandchildren. But that doesn’t mean she didn’t suffer throughout her life from her experience with polio at the age of three.  Her scars served as a constant reminder of the dangers of polio – a disease that greatly impacted her life, her parents’ lives, her siblings’ lives and even the lives of her children, grandchildren and great-grandchildren.

As a mother, I’m happy that my children will never have to suffer through the same experiences that Mildred did. I’m even grateful that my own parents chose to vaccinate me as a child and that they raised me to value the preventive power of vaccines.

I’m thankful to all the nurses who take the time to educate others about the benefits of vaccines, care for people who are suffering from vaccine preventable diseases, and bear the responsibility of administering vaccines.  I’m also encouraged by non-profit organizations like Nurses Who Vaccinate, which help to position nurses and other health care professionals as vocal vaccine advocates among their colleagues, patients, and the public.

And I’m grateful to all the teachers who do their part to educate people of all ages about the dangers of infectious diseases and how vaccines can help to boost our immune system.  I’m especially impressed with organizations like The Vaccine Makers Project which offers scientifically supported, historically accurate, and emotionally compelling content that teachers can use in the classroom to help excite young people about the power of vaccines.

While polio does still exist in the world, we are extremely close to eradicating it, thanks to the success of vaccines. However, as long as there are communities with polio vaccination rates that fall below the 80-86% level that is needed to prevent the spread of the disease, there is still a risk of a polio outbreak   As you take the time to thank mothers, nurses and teachers this week, be sure to also  learn more about polio and polio prevention on the Vaccinate Your Family website.  

 

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Resolve To Protect Your Family From Cancer

January 9, 2018 1 comment

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By Shaundra L. Hall, Southwest Regional Director, National Cervical Cancer Coalition (NCCC)

January is Cervical Health Awareness Month and if you’ve resolved to make healthier choices in 2018, then ensuring your loved ones are vaccinated against the deadly strains of human papillomavirus (HPV) should be on the top of the “resolutions to keep” list.

Cancer prevention is a gift of health for your child’s, and grandchildren’s, future.  But it’s only a gift if given early in life.

My journey with HPV began at the age of 17.

My very first Pap smear exam had an abnormal result. Over the next several years, I would have some normal and some abnormal Paps, and it was eventually determined that my cervical dysplasia required medical treatment to remove abnormal cell tissue that might become cancerous. I went on to have multiple procedures over the years – a LEEP/cold knife cone, cryosurgery – you name it, I had it.  So many painful treatments chipping away precious tissue from my cervix.

ShaundraHall2Years later, after my husband and I were married and bought our first house together, we started thinking about starting a family. When pregnancy didn’t happen as quickly as we had hoped, I made a visit to my gynecologist’s office. Back in to the stirrups I go, and with one look heard “Ohhhh…

My heart sank.

Until we had started trying for a family, I’d had four years of completely normal Pap tests and I felt confident that I was healthy enough to get pregnant.  I couldn’t have been more wrong.

During the course of about 10 months, some cancer switch turned on and I went from 4 years of a healthy cervix to invasive cervical cancer.  About fourteen days after my doctor’s appointment, I was in the hospital having a hysterectomy to save my life from a HPV related cancer.  Not only were my husband and I in our 20s trying to deal with the fact we would never have our own biological kids, but now we had the big “C” staring us in the face.  To say it was devastating is an understatement.

I wish I could say that I left all of that sadness from nearly 20 years ago behind me, but the reminders of my battle with HPV related cancer is with me every day. When I see my scar or when my legs, ankles and feet swell due to lymphedema from my missing abdominal lymph nodes, it’s clear that I can’t escape what the cancer has done to me. I think about it when I encourage my husband to keep each and every dental exam to ensure that he is not at risk for HPV related oropharyngeal or head and neck cancer.  My husband has been an amazing partner sticking with me through all of the intimacy challenges related to the physical modifications to my body, and I only wish we had the opportunity to be protected from HPV when we were younger. Read more…

In “The Pathological Optimist” Wakefield Profits From False Hope and a Disproved Autism-MMR Hypothesis

October 23, 2017 33 comments

This guest post has been written by Every Child By Two Board Member, Dr. Paul A. Offit, who is a professor of pediatrics and Director of the Vaccine Education Center at the Children’s Hospital of Philadelphia. 

The Pathological Optimist, which had its theatrical release on September 29, 2017, is a movie about Andrew Wakefield, the British doctor who claimed that the measles-mumps-rubella (MMR) vaccine caused autism.

Although much has been written about this man and his discredited hypothesis, one question remains unanswered. And it’s this question that makes Andrew Wakefield such an interesting character study.

Among scientists, Andrew Wakefield is unique.  He’s not unique because his explanation for why MMR caused autism was nonsensical. (MMR vaccine doesn’t overwhelm the immune system; measles vaccine virus doesn’t damage the intestine; and brain-damaging toxins don’t then enter the body and cause autism). And he’s not unique because 17 studies performed in seven countries on three continents showed that those who received MMR weren’t at greater risk of autism. (Four thousand studies are published in the scientific and medical literature every day; not surprisingly, false claims are published all the time). He’s not unique because the Lancet, the medical journal that published his original paper, retracted it when the editor learned that Wakefield had misrepresented biological and clinical data. (Researchers who falsify data are an occasional problem in science—a human endeavor). And he’s not unique because several of the families mentioned in his paper were in the midst of suing pharmaceutical companies, essentially laundering their legal claims through a medical journal. (Conflicts of interest occasionally confound medical research). Finally, he’s not unique because his misrepresentations and falsehoods caused him to lose his medical license. (Every year some doctors lose their license to practice medicine).

No. What makes Andrew Wakefield unique is that unlike many of the discredited, defrocked, and humiliated scientists who have preceded him, he continues to insist that he is right and that the rest of the world is wrong.

The question is: Why? In The Pathological Optimist, executive producer Miranda Bailey pulls back the curtain.

Between 2011 and 2016, Bailey, who is best known for her work in Swiss Army Man, The Diary of a Teenage Girl, and Norman, embedded herself in Andrew Wakefield’s life. Bailey is no novice. She’s spent a lot of time working around people who act for a living. She’s not easily fooled. And she’s not fooled here.

Throughout the movie, Andrew Wakefield’s grandiosity, his exaggerated sense of self-importance, his fantasies of brilliance, his sense of entitlement, his need for constant admiration, and his arrogance are on full display.

The Pathological Optimist follows Wakefield on what appears to be a cross-country, money-seeking tour targeting parents of children with autism. Wakefield isn’t raising money for research on autism’s causes or cures. And he isn’t raising money to promote better services or better educational tools for children with the disorder. Rather, he’s raising money for himself; specifically, to pay legal fees for his lawsuits against Brian Deer, the investigative journalist who had exposed Wakefield’s falsifications in the Lancet paper, and Fiona Godlee, the editor-in-chief of the British Medical Journal who had called Wakefield’s paper fraudulent and challenged the Lancet to retract it.

Wakefield is out to restore his reputation. And he’s taking advantage of vulnerable parents who believe in him to do it. For Andrew Wakefield, it’s all about Andrew Wakefield.

Read more…

101 Empty Chairs

June 23, 2017 1 comment

By Serese Marotta, Chief Operating Officer, Families Fighting Flu

Sadly, the Centers for Disease Control and Prevention (CDC) have reported that the 2016/2017 flu season has now claimed the lives of more than 100 children. 101 to be exact.  This statistic is hauntingly familiar – three of the past five flu seasons also claimed the lives of more than 100 children.

101 Pediatric Flu Deaths

Sometimes we forget what these numbers really mean.

It means that 101 families had to bury their beloved children; 101 families have to listen to the deafening sound of silence left by their lost loved ones; and 101 families now have empty chairs at their dinner tables every night.

I paint this picture because I know how these families feel. They’re probably thinking the same thing I did after my son died from the flu – how did this happen and what could I have done to prevent it? 

Unfortunately, unless flu has personally touched your family like it has mine, chances are you’re not all that worried about flu.  You may even think it’s just a bad cold. Well, as the mother of a child who lost her five-year old son to flu, I’m here to tell you, “Not so“.

According to the CDC, flu kills more Americans every year – up to 56,000 people – than any other vaccine-preventable disease.  Since 2004, when the CDC started reporting pediatric flu deaths, 1,466 children – many of whom were otherwise healthy – have lost their lives to flu.

Flu is that infectious disease that seems to fly under the radar. While everyone is focused on the latest outbreak of measles, mumps, pertussis or meningitis, flu is that one disease that we know we will have an outbreak of each and every year.  As prevalent as flu is, it still manages to creep up like a quiet thief in the night, stealing our loved ones right out from under our noses.  And yet when it does, we wonder why we never saw it coming.  Flu has killed millions of people worldwide – and it will continue to do so for the foreseeable future.

So what can we do to protect ourselves and our loved ones from influenza each year?  Annual vaccination.

Studies show that flu vaccination can reduce the likelihood of death and hospitalization from flu in people of all ages.  Yet, less than half of Americans get their annual flu vaccine.   Read more…

How My Sister Helped Save My Daughter From Whooping Cough 

June 19, 2017 21 comments

TamaraSheffieldHeadShotBy Tamara Sheffield, MD, MPA, MPH, Medical Director, Community Health and Prevention, Intermountain Healthcare

In my role as a medical director at Intermountain Healthcare in Salt Lake City, Utah, I am responsible for Community Health and Prevention.  You could say that I’m a professional advocate for immunizations, since they prevent many illnesses, hospitalizations and even deaths.  In fact, maternal immunizations are one of today’s most promising new preventive health strategies.

By vaccinating pregnant women against certain diseases – like whooping cough (pertussis) and influenza – we are reducing the amount of illness, hospitalization, miscarriage and pre-term labor these women experience as a result of these diseases.

Additionally, maternal vaccines enable pregnant women to pass on protective antibodies to their unborn babies.  These antibodies provide newborns with early, short-term protection against pertussis or flu, during the time when they are too young to receive their own vaccines to prevent these diseases.

For instance, children must be six months of age before they can receive their first flu vaccination, and the DTaP vaccine, which helps prevent whooping cough in children, is administered as a series of five shots (with doses at 2, 4, 6, 15-18 months, and 4-6 years of age). Sadly, there are about 100 pediatric deaths due to influenza each year, and 90% of all deaths associated with whooping cough are among infants, mostly because the thick mucus that accompanies the infection has a severe impact on a baby’s ability to breath.

For an expectant woman, changes in the immune system, heart and lungs during pregnancy make them more prone to illness.  When a pregnant women gets ill, it raises her risk of complications, such as premature labor and delivery.  But research shows that mothers can help protect themselves and their babies by getting vaccinated during pregnancy.

The flu vaccine is recommended at any trimester of each pregnancy. An adult Tdap booster vaccine is recommended during each pregnancy as well – and studies show that the best time for optimal transfer of protective antibodies is at 27-to-36 weeks gestation. The ongoing research continues to indicate that these maternal immunizations are effective at reducing the number of flu and whooping cough-related illnesses, hospitalizations and deaths among infants.

The abundance of scientific evidence on this matter is one reason I am a strong advocate for maternal vaccinations.  However, I have a very personal reason to advocate for maternal vaccinations as well.

You see, I know an amazing 25-year-old young woman who nearly died from whooping cough when she was just three weeks old. 

Alicia Outside ICU at Phoenix Childrens' Hospital

Like many infants who suffer with whooping cough, this beautiful baby girl contracted it from a family member.  During the weeks before delivery, her mother developed a persistent cough that went undiagnosed, and she unknowingly passed whooping cough on to her baby.  Three weeks later, after a couple of incidents where the baby stopped breathing and turned blue, her parents rushed her to the hospital. Read more…