National Meningitis Association Launches Interactive Online Panel About Meningitis Dangers

Main Category: Infectious Diseases / Bacteria / Viruses
Also Included In: Pediatrics / Children's Health;  Neurology / Neuroscience;  IT / Internet / E-mail
Article Date: 12 May 2009 - 1:00 PST

email to a friend   printer friendly   view / write opinions   rate article

Lori Buher and Marybeth Leeber each watched her child ravaged by meningococcal disease (also known as bacterial meningitis) -- enduring comas, painful skin grafts, organ transplants and multiple limb amputations. Jane Hession and Kathy Huddleson both lost an otherwise healthy child to the disease within hours of their first symptoms. These mothers are now banding together online to share their experiences and answer questions in an effort to protect other families from this devastating disease. They are part of the National Meningitis Association's (NMA) new online panel (www.nmaus.org/panel/), an interactive resource that allows people from across the country to communicate with these mothers about meningococcal disease.

Lori, Marybeth, Jane and Kathy are also part of NMA's Moms on Meningitis (M.O.M.s) program, a coalition of mothers from across the country whose children's lives have been significantly affected by meningococcal disease, and who support NMA in its efforts to educate local communities about meningococcal disease and prevention.

"Most of the parents involved in NMA didn't know about meningococcal disease, or that it is potentially vaccine-preventable, before their children got sick. We want to prevent that from happening to other families," said Lynn Bozof, Executive Director of the National Meningitis Association, whose own son Evan also died from the disease. "Our new online panel allows people to interact with mothers who have first-hand knowledge of meningococcal disease, and to receive personalized answers to their questions."

The online panel is the centerpiece of a larger NMA social media outreach campaign to educate families about the importance of meningococcal vaccination. As part of these efforts, NMA also recently launched a Facebook Page containing critical information about the disease. NMA is asking families across the country to help spread the word by becoming fans of the Page and inviting their friends to become fans as well.

Bozof's own stake in reaching out to people couldn't be greater. "If we had known more about meningococcal disease before our son Evan got sick, we would have had him vaccinated and he would be alive today," Bozof said. "We are unable to change what happened to our children, but by sharing our experiences and what we've learned from them, we hope to provide other parents with the information needed to help protect their children from this horrible disease."

Meet the M.O.M.s

Lori Buher of Mount Vernon, Washington -- Lori's son Carl was a 14-year-old freshman in high school when he was diagnosed with meningococcal disease. Carl came home from a football game complaining that he didn't feel well, but thought he was coming down with the flu. The next day he had to be rushed to the hospital, where he was diagnosed and treated. Carl survived, but had to undergo amputation of both of his feet and three of his fingers as a result of the infection.

Jane Hession of Alexandria, Virginia -- Jane's son Brendan was in high school when he died from meningococcal disease. Brendan began complaining of pain in his legs one evening, and by the following afternoon he was so weak that he collapsed. Jane called the paramedics, who diagnosed Brendan with the flu and instructed Jane to give her son fluids. Shortly after, Brendan's father, a cardiologist, arrived home to discover a rash taking over his son's body. Realizing it was meningococcal disease, the parents rushed Brendan to the hospital, but it was too late. Brendan died only 16 hours after the onset of his first symptoms.

Kathy Huddleson of Cedar Rapids, Iowa -- Kathy's 20-year-old daughter Elizabeth was a junior at the University of Northern Iowa when she died of meningococcal disease. Kathy and her husband awoke one morning to a phone call from Elizabeth's boyfriend saying Elizabeth was in the hospital and had stopped breathing. The Huddlesons did not take time to ask questions, and hurried to the hospital. It wasn't until they arrived and were told "it doesn't look good" that the extent of Elizabeth's illness took hold. Elizabeth died before her parents were able to see her.

Marybeth Leeber of Stony Point, New York -- Marybeth did not know about meningococcal disease until it nearly took the life of her 5-year-old daughter, Lauren. The day before Halloween, Lauren began feeling ill from flu-like symptoms. When a purplish rash developed on her body, Lauren's pediatrician recognized it as a classic symptom of meningococcal disease and had Lauren rushed to the hospital. To save her life, doctors had to amputate Lauren's right hand, the fingertips of her left hand and both her legs below the knee. Lauren also had to undergo a kidney transplant due to complications from the disease.

About Meningococcal Disease

Meningococcal disease, commonly called meningitis, is a serious, potentially fatal bacterial infection that strikes nearly 3,000 Americans annually. It is often misdiagnosed as something less serious because early symptoms -- which may include sudden onset of fever, headache and stiff neck -- are similar to the flu. Nausea, vomiting, sensitivity to light, altered mental status and seizures often accompany these symptoms. After the disease has taken hold, a rash may appear. Left untreated, the disease can progress rapidly, often within hours of the first symptoms, and can lead to shock, death or serious complications, including hearing loss, brain damage, kidney disease or limb amputations.

Adolescents and young adults are at increased risk for meningococcal disease, and account for nearly 30 percent of all cases. The majority of meningococcal disease cases among adolescents are potentially vaccine-preventable. There is a vaccine available for use in children and adults aged 2 through 55 years.

The Centers for Disease Control and Prevention (CDC) recommends meningococcal vaccination for all adolescents 11 through 18 years of age, and college freshman planning to live in dormitories.

About the National Meningitis Association

NMA is a nonprofit organization established in 2002 by parents whose children have died or live with permanent disabilities as a result of meningococcal disease. NMA's mission is to educate families, medical professionals and others about bacterial meningitis and prevention approaches to the disease.

Source: National Meningitis Association