Lynn Bozof learned about the deadly effects of meningitis in 1998, when her 20-year-old son, Evan contracted meningococcal disease, an aggressive form of meningitis which starts with flulike symptoms and can end in the patient’s death in just 24 hours.
“My son hung on for 26 days,” Bozof said at the Hanger Education Fair and National Meeting. “In the process, he had four amputations.”
Amputations are just one of many life-changing adverse events of meningitis that patients and families must navigate, if they survive the disease. Four years after Evan’s death, Bozof founded the National Meningitis Association (NMA), which has four goals: to instill an understanding of disease impact and valuation of the meningitis vaccine; to advocate in support of directives and mandates for the vaccine; to support families and survivors who have been affected by meningococcal disease; and to build awareness for all adolescent vaccine-preventable diseases.
The organization has two main programs to provide support for people affected by meningitis. Together Educating Against Meningitis (T.E.A.M.) includes meningococcal disease survivors, siblings and other family members of those who have been affected by the disease.
“Meningitis … does not strike just one person. It strikes the whole family,” she said, adding that NMA’s support network connects people with others who have been through the same situation. “When my son died, I had no one to talk to [who had experienced the same thing].”
Moms on Meningitis (M.O.M.s) is a coalition of more than 50 mothers from the United States who lost children or whose children’s lives were drastically affected by meningococcal disease.
“Both our M.O.M.s and T.E.A.M. members conduct various outreach efforts, and one of our main goals is to support these families as they deal with the devastating effects of the disease. One day you have a healthy child and the next day you are told your child most likely is not going to survive. It just blindsides you,” Bozof said.
The NMA website features videos of meningitis survivors telling their stories, and each of these videos emphasizes the protection a vaccine would have offered.
“I cannot stress enough the importance of vaccinating,” Bozof said.
Bozof also offered suggestions for prosthetists when working with amputees who lost their limbs due to meningitis.
“It is important for [practitioners] to take the time and care when explaining technical details, which will be new for the patient. It is also helpful to design a timeline for progress,” she said.
A “continuous caring relationship” with the patient is key, she said, adding that a sensitivity to the patient’s sense of loss and grief is important in helping that patient overcome mental and emotional challenges brought on by the sudden limb loss. She said patients may need their prosthetists to acknowledge the impact of the disease on their lives.
“The patient may not want to recreate their previous life,” she said, because “the transition involves a process of grief and acceptance, which may lead people down a new path.” – by Amanda Alexander
Bozof L. The National Meningitis Association. Presented at: Hanger Education Fair and National Meeting. Feb. 3-6, 2015. Las Vegas.
Disclosure: Bozof reports no relevant financial disclosures.