Pictured above: Representatives from the awareness group Meningitis Angels accompanied by four BYU faculty members, with Beth Luthy and Lacey Eden on the far left, and Janelle Mcintosh and Renea Beckstrand on the far right.
Meningitis. It ebbs and flows in terms of public visibility, and for some people the disease is either unknown or not a concern. For others, however, it is constantly on their minds as they work to combat the risk of another outbreak.
Friday, September 16, 2016 will see the awareness group Meningitis Angels at BYU presenting information about the disease. Those in attendance will include Johnny Dantona and Leslie Meigs, two meningitis survivors, as well as Frankie Milley, the group’s founder and national executive director. Also present will be Lacey Eden, an assistant teaching professor whose passion is promoting vaccinations.
Here are their stories.
“I see those kids that are so helpless.”
If you were to ask a college student about meningitis, assistant teaching professor Lacey Eden believes that you probably get a response along the lines of “I don’t know what that is” or “Menin-what?” Few college students understand much about the infectious disease that ha s the deadly potential to wreak havoc on a crowded college campus.
“There’s not many people that know a whole lot about Meningitis B,” Eden says. That, she explains, becomes especially problematic on college campuses, where various factors including proximity of students, poor diets, little sleep, and lack of immunization requirements increase the possibility of an outbreak.
Besides teaching at the Nursing College, Eden also educates the general public about preventing infectious diseases through vaccinations. In fact, her involvement in that cause is what brought the Meningitis Angels, who work in the same cause, to her in the first place.
“It all started with House Bill 221 last year, which was a bill to require education before parents could get their immunization exemptions,” Eden says. The bill, which did not pass, would have required that parents learn more about immunizations before they could refuse vaccinations for their children. Eden and fellow teacher Beth Luthy worked tirelessly to promote it, meeting with the bill’s sponsor, Utah Representative Carol Moss, to help her write it and also giving interviews to the media.
This all made her a viable partner for the Angels’ upcoming Utah awareness campaign. As a vaccination advocate, she has accomplished much, including creating an app that helps mothers know when to immunize their babies and also heading a special interest group on immunizations for the National Association of Pediatric Nurse Practitioners. As a teacher, she knows how to work with students and faculty.
In April, the Angels asked for Eden’s help. She agreed; her first assignment was to meet with student body presidents from various Utah colleges to discuss meningitis and how to prevent it. The student body presidents, in turn, would return to their colleges and spread the information.
“So the whole idea behind the Meningitis B Awareness campaign is to educate college students about Meningitis B,” Eden says. “They took it back to the student body officers and talked about how they could do their awareness campaign on campus.”
Getting the correct information out there for students is a key focus for Eden.
“Even if we can educate a very small percentage of those people, hopefully those people will then educate their friends, and then their friends will educate their friends, and hopefully we can see people being more aware of this,” she says.
Another eventual goal of hers is helping develop college vaccination requirements, including at BYU. Utah is one of few states that does not have university vaccination laws.
“I think we should, especially because when you consider the severity of meningitis and how quickly it can be debilitating and even cause death, the fact that there is an immunization to prevent that. Even though it’s a small chance that you could get it, the repercussions are totally worth the requirement to get vaccinated,” Eden says.
One of her biggest motivations is her belief that immunizations are a social responsibility. If one person doesn’t get vaccinated, she explains, they could be putting individuals in their community at risk, especially those with weaker immunization systems.
“I think for me it’s those individuals who are immunocompromised and unable to get immunized, so they depend on everyone else to be immunized to protect them,” Eden says. “As my experience in the pediatric office, I see those kids that are so helpless, and those who can get severely ill from things like that, and to me it’s all about that. Protecting the weakest in our community is really a reflection of how we are as a whole.”
She also understands the wide array of opinions that are spread online, many of which are not backed by substantial medical evidence. Her hope is that this event will help students understand the facts behind the disease, and also that in the future students will rely on dependable sources for information about it.
“I feel like college students are very savvy with social media, and they can very easily get messages on social media about immunizations that are false,” Eden says. “I would just encourage them that while they’re doing their research that they look for credible, reliable research and sources that have a scientific basis and proof about vaccines and their safety.”
December 2017 Update: In March 2017 the Utah House of Representatives passed House Bill 308, a bill that focused on teaching parents about the risks of not immunizing children. Eden played an important role in the creation of this bill.
“If you give up, you’re not going to get anywhere.”
Johnny Dantona, 21, of North Carolina is definitely the athletic type. He enjoys baseball and basketball, and every Monday tries to make it to the bowling lane with family or friends. This may be surprising to some, considering that at age three Dantona lost both legs after contracting meningitis.
“It’s a little difficult the way I have to stand and everything, but I do what I like to do,” Dantona says.
Meningitis is a disease that inflames the area around the back and brain. It comes in many forms, including bacterial meningitis, which can kill a person in less than a day. Other times it leaves its victims with intensive medical issues. Dantona was no exception.
“I don’t remember much because I was so young, but I know that I was fine one minute during the day and then by midnight I was on life support in the hospital. I was in there for six months,” he says. “I ended up losing my fingers, both my legs, and the disease actually hit my whole left side of my body, so my left side is weaker than my right.” That includes the left side of his brain, which slowed down his learning ability.
The years following the infection have had their challenges. Learning problems, medical costs, and the effort to obtain special prosthetics that insurance won’t cover have all been obstacles, but Dantona is not a quitter.
“If you give up, you’re not going to get anywhere. For me, this pushes me to do what I want to do, what I think is right,” he says. He walks the talk; Dantona was an ROTC member in high school and for training ran a mile on the track without his prosthetics. Despite the pain, he still goes out to try and walk as much as he can.
His family was eventually contacted by Frankie Milley and he soon joined the Meningitis Angels. Dantona is a national teen leader within the organization. His passion is helping raise awareness of the vaccination for college students.
“If it helps them, it makes me feel better knowing that they’re not going to go through the same stuff that I went through, or worse,” he says. “That’s what keeps me going.”
Despite the trials he has faced, he appreciates that his experience can have a positive impact on others.
“With the college students though, even if they don’t understand what [meningitis] is, they see the side effects of what the disease does, so then most of them will go out and probably look it up and people will learn more about it if they want to,” he says. “I think them seeing us and how we look and how we get around is what helps them out a lot more, too.
“What’s frustrating is that it’s all preventable.”
Leslie Meigs, 26, doesn’t strike people as someone who came within inches of death from meningitis. However, her story reveals a long and painful journey spanning nearly 20 years.
One day when she was eight, the Texas native fell ill. Everyone assumed that it was the flu.
“Long story short, that night I was life-flighted to Texas Children’s Hospital and put on a ventilator,” she says. “They put me into a drug-induced coma for two months. There was a point where my brain function was almost completely gone, and the hospital had voted to go ahead and stop life support.”
Right when the doctors were about to tell her family the hospital’s decision, her right hand stirred. That simple motion saved her life and started her path to recovery. Slowly, she says, her brain function returned. However, the disease left her with a long list of health complications.
“I had to learn how to walk again. I have scarring all over my body,” Meigs says. “I had to go on continual dialysis because my kidneys were covered in scars, and so a lot of my scarring is internal. I have a lot of organ damage, a lot of blood issues.” In fact, years after she contracted the disease she had to receive a new kidney, donated by her father, and now has to take many medications to ensure that everything functions.
Meigs says that life for a survivor is difficult, both physically and mentally.
“So one of the big points I like to make when talking to fellow students or talking to the public in general is that with this disease, you don’t just get it and its gone,” she says. “If you’re lucky enough to survive the disease, you are reminded of it every single day, and you suffer every single day because of it. It’s something that you have to learn to live with.”
“What’s frustrating is that it’s all preventable,” she says.
Meigs was one of the first victims with whom Milley worked. With her help, Milley promoted a bill designed to educate Texan citizens about the dangers of meningitis. Now, years later, Meigs works as a national teen leader for the group.
“Being able to communicate with people just how horrifying this disease is and how important it is to protect yourself and in doing so you protect others, it gives a purpose to our experiences to know that we can actually help people from experiencing this same sort of suffering and financial costs,” she says. “[Meningitis is] a long word of a long disease slapped onto the news with every other issue that’s going on, so to be able to put a picture, a face to it is what really makes the difference.”
Meigs is a strong advocate for everyone to receive the vaccination, not just to protect themselves but also others.
“The example I like to give for it being a public health issue is that it’s in the same line as traffic laws. You don’t stop a stop sign just to protect yourself,” she says. “You stop at a stop sign for other people. You don’t vaccinate just to protect yourself. You vaccinate to protect your entire community.”
“Ryan didn’t have to die.”
Frankie Milley is an exuberant Texas native who loves a good laugh. However, when it comes to talking about her work at Meningitis Angels, pain shows itself behind the smile. Her story is one of loss and coping, as well as dedication to preventing further tragedies.
It all started Father’s Day, 1998. Her only child, Ryan, developed a fever along with an earache.
“He was eighteen, just reached his pro golf status, just graduated high school, and was getting ready to go to college,” she says. Events quickly took a turn for the worst, in the process changing Milley’s life forever.
“Fourteen hours later he was laying on an emergency room table with blood coming from every orifice of his body, and he died,” she says.
Milley could not believe what had happened. In retrospect, she can now see that her situation paralleled that of many who have lost family to meningitis; there was limited information available at the time about the disease and the vaccine to prevent it. Milley became determined to change that.
“First I grieved, then I got angry, and then I got busy,” she says.
Since that day, she has helped write, by her count, almost 42 laws addressing vaccinations and meningitis.
In 2001 she founded the Meningitis Angels as a group dedicated to spreading facts to families. According to her, it was instrumental in convincing the CDC to put up recommendations about meningitis vaccinations. The group also works to educate policymakers about the issues involving the disease so that they make informed decisions.
Beyond those fields, the group serves as a hub for families who have been affected by the disease.
“Meningitis Angels also does a lot of hands-on work with the kids who are victims. We offer scholarships for college and technical training. We provide special equipment for the kids sometimes when the insurance doesn’t cover it,” she says.
The kids affectionately refer to Milley as “momma bear.”
“We’re a national support group. We’re like a big family,” she says. “We have a good time. We’ve laughed, we’ve cried together.”
That support becomes critical for families facing down meningitis. Milley lists several possible results of each case that extend beyond just the physical, including financial ruin, insurance problems, and fracturing of families.
She gives as an example one child within the organization who lost his arms and legs, thus requiring an attendant all day, every day.
To her, the choice becomes clear.
“If you weigh all the costs of all of that—some of it you can’t even put a price on, it’s life—if you put the price on the economics and the cost of the aftercare of meningitis, not to mention the millions that the first initial arrival to the hospital can take, what’s a vaccine?” she says.