Johanna Papas has bravely shared her heart-wrenching experience of watching her daughter battle the aftereffects of an acquired brain injury caused by meningococcal disease. Ten years later, her daughter still struggles with significant challenges, including speech, mobility, and severe migraines. Papas emphasizes the profound toll that this rare illness takes on both child and parent, stating, “It doesn’t feel rare when you’re watching your child suffer.” Her story underscores the pressing need for greater awareness regarding the signs and symptoms of meningococcal disease, particularly since many parents, despite having heard of it, may not recognize its manifestations.
Just three days before her daughter’s condition was diagnosed, Papas happened upon an article detailing another parent’s ordeal with meningococcal disease. This prior knowledge possibly equipped her to better navigate her own crisis. She reflects on the inadequacies in existing knowledge about the disease and how its symptoms can vary widely, making it difficult for parents to identify when something is wrong. In Australia, recent statistics have confirmed 56 diagnosed cases of meningococcal disease, with children aged zero to four and teenagers aged 15 to 19 being the most at risk.
Although many survive the infection, it can lead to fatality in up to 10% of cases within 24-48 hours. Karen Quick, the chief executive of Meningitis Centre Australia, points to alarming evidence that suggests low awareness levels among young adults, with nearly half unable to identify any symptoms. This lack of knowledge is equally concerning among parents, where one in four of those with young children also struggle to name a single symptom of the disease.
The progression of meningococcal disease can often be rapid, resulting in critical illness within just one day. While many associate the disease with the appearance of a rash, Quick warns that this is frequently one of the last symptoms to arise, or may not surface at all. Instead, other early symptoms such as fever, headache, and vomiting may offer the first crucial warnings of a meningococcal infection. The urgency for broader awareness is supported not just by health professionals but also by public figures, including Olympians.
High-profile athletes like Paralympian Jay Dohnt and Olympian Libby Trickett are now advocating for increased awareness of meningococcal disease. Dohnt, who lost both legs to the infection at just 13 years old, and Trickett, who took her child to emergency care for fears of the disease, illustrate the gravity of acting swiftly when symptoms arise. Trickett emphasizes the importance of acting quickly for the sake of a child’s health, underscoring that interpersonal and communal awareness can lead to better educational outcomes.
Papas strives to empower others to listen to their instincts as parents, encouraging them to seek a second opinion when necessary. She strongly believes that parents have an innate understanding of their children’s health and urges them to trust their instincts. Through sharing her story, she aspires not only to educate others about meningococcal disease but also to inspire vigilance and proactive health measures when it comes to safeguarding the health of children and young people. By fostering discussions about the symptoms and implications of the disease, Papas hopes to create a stronger support network for families facing similar health adversities.
