In 24 hours, Lily’s life changed. "On Christmas Eve, I got sick. I got the flu. Well, I thought it was flu or a virus", remembers Lily, 23, on the verge of tears. On Christmas day, she felt worse and woke up with a fever. "By Christmas night, I was throwing up and couldn't keep water down..." At midnight a rash had formed in half and an hour and her mum called the doctor. Lily went straight to hospital. A few hours later Lily was put on dialysis. Lily was diagnosed with meningococcal meningitis, a disease that strikes fast and hard, and can even kill in less than 24 hours without an immediate diagnosis and appropriate treatment.
Sumeyra, 20, also find it difficult to recall how quickly she fell ill. "I had aching bones, vomiting, stiffness and abdominal pain," explains Sumeyra. When her dad realized that she had a rash developing, he took her to the hospital. They put her on antibiotics immediately without even waiting for the test results. Sumeyra was then put in an induced coma because of multiple organ failure. Less than 24 hours had elapsed since the first symptoms had appeared.
Nothing will ever be the same for these two young women. Lily is still waiting for a kidney transplant and Sumeyra has a chronic kidney disease. But they are alive.
Today, after months of recovery, they are trying to rebuild their lives. Above all, they want to testify. To speak so that young people of their age do not have to endure the same suffering and see their lives ruined by side effects that have a huge impact on everyday life.
As many as 10-20% of survivors may have severe permanent health problems: amputations, mental retardation, paralysis, hearing loss.
Speaking out to Avoid Disaster
Lily and Sumeyra are among the 383 cases of meningococcal meningitis reported in Australia in 2017, cases that have been on the rise since 2013 with an increase in meningitis due to a particularly virulent serogroup W. By October 2016, these rising cases were reported to the Department of Health and in January 2017, the State of Western Australia announced the first vaccination program in response to the outbreak. Other states quickly followed.
Adolescents are significant vectors of the disease and play a central role in transmission, with a peak at 19 years of age1. They are part of high risk populations. To curb the epidemic, programs targeted children and adolescents aged 15 to 19. But what should be done for 19-24 year olds?
In a collaboration between Sanofi Pasteur and the University of Technology Sydney, students were given the opportunity to work on a real life public health issue, meningococcal disease. The students were tasked with creating proposals to raise awareness of meningococcal disease among their peers at the university. The winning group realized that prevention starts with information and as such, proposed an interactive art festival.
Supported by Sanofi Pasteur teams, the students’ enthusiasm and involvement grew throughout the project: “It was very interesting to see how these young people took something that, over time, they became passionate about and implemented,” says Anna Trygg, Product Manager at Sanofi Pasteur. “They went from the idea stage, all the way to implementation."
The success of this awareness campaign is based on communications made by students for students - not by representatives of the health authorities.
“When they said in the ER room that it could be meningococcal, I piped up and said: no, I've had my vaccinations. But yeah, I obviously hadn't had them all, which is upsetting,” says Lily. “So, you may not have been vaccinated, and it's worth going to your GP to talk about it and see what you've missed out on.”
When survivors speak, their words carry important messages: prevention is the most effective way to avoid rare but unpredictable, fast evolving and very severe meningococcal diseases.