Archive

Posts Tagged ‘Alicia Stillman’

Meningitis B and Your College Student: Preventing the Call

February 14, 2018 1 comment

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. 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 Meningitis B vaccines 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 Arizona Universities 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.

StillmanFamily

Emily and the Stillman family after her high school graduation.

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 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 weren’t preventable in the U.S. when Emily Stillman contracted and lost her life to Meningitis B, but they are today. In October of 2014 and January of 2015, the FDA approved licensing for two different vaccinations for Meningitis B. Soon after that, the Advisory Committee on Immunization Practices (ACIP) of the Center for Disease Control and Prevention (CDC) acknowledged that college age students should talk with their doctors about Meningitis B.

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.

Our Off to College flyer launched an awareness campaign for parents and college age students to make certain each has the benefit of protection from all strains of meningitis.

Screen Shot 2018-02-13 at 3.16.02 PM

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 FDA (Food and Drug Administration) 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.


IMG_0925

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_Davis_16 - Member Photo.jpgDebbie 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.

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  


 

stateoftheimmunion_hepb_fb_v2

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. 


vyf_fb01

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 9 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…