World Meningitis Day 2020
Today, as millions of people unite to mark World Meningitis Day, we join survivors, families, health professionals, patient groups, and medical organisations to raise awareness of the devastating impacts of meningitis - and the steps we can all take to defeat the disease.
What is meningitis?
Meningitis is the inflammation of the fluid and membranes that cover the brain and spinal cord. Its causes are varied, and can include bacteria, viruses, fungi or parasites.
Meningitis affects millions of people around the world. In fact, meningitis (together with neonatal sepsis) causes more deaths in children younger than 5 years old than malaria.[1] For those who survive the disease, serious after-effects are common and can include brain injury, limb loss, hearing loss and organ damage.
Despite the devastating impacts of the disease, many countries don’t provide adequate prevention, treatment, disease surveillance or support for those affected.
However, 2020 is a milestone year, as the Global Roadmap to Defeat Meningitis by 2030 was accepted by the World Health Organization’s (WHO) Executive Board and is noted as a potential topic at the World Health Assembly in May. The Roadmap is a WHO initiative, driven by the Meningitis Research Foundation and is reflective of the voices of survivors, impacted families and motivated people who are calling on their governments to acknowledge that enough is enough, and change is possible.
Driven by patient groups: CoMO and Member representatives from all over the world have been consulted to help shape the Roadmap so that we can defeat meningitis everywhere.
This globally coordinated plan sets out the actions required to ensure that no one has to experience the devastation this disease can cause. Now, more than ever, it is clear that everyone has a part to play in defeating meningitis.
"A world free from meningitis is a world we all deserve to live in." - Sarah Joyce, meningitis survivor and Founder of The Sarah Joyce Project, Australia
How can we defeat meningitis?
Prevention is key
Vaccines are the most effective method of prevention and save countless lives. This is particularly important with meningitis as its symptoms can be similar to the flu but someone's condition can rapidly deteriorate in just a few hours. With healthcare systems worldwide being overburdened due to the coronavirus, prevention is more important than ever.
“Meningococcal meningitis can kill in a matter of hours - with little to no warning - or cause lifelong disabilities. To help prevent it you need two types of meningitis vaccines (MenACWY and MenB). Few people know about both vaccines. That is why the Meningitis B Action Project works to empower young adults and their parents with the information they need to proactively discuss the vaccines with their healthcare providers. We lost our daughters to meningitis B and we don’t want one more family to have to endure the same fate. Talk to your doctor about both meningitis vaccines. Together, we can stop meningitis."
"Together, we can stop meningitis." - Patti Wukovits and Alicia Stillman, Meningitis B Action Project, USA
Diagnosis and Treatment
Not all types of meningitis are vaccine preventable, so it’s critical to know the signs and symptoms, as the disease is so quick to develop, and can kill in hours.
Kyaw Linn is a professor of paediatric neurology, working in Yongon children’s hospital, Myanmar. He sees cases of meningitis almost every day and has witnessed the after-effects it can have:
“Bacterial meningitis is common in Myanmar. Late diagnosis and treatment can be due to a lack of knowledge about the disease, financial issues, and transport problems, as well as antibiotic resistance, a shortage of lab testing facilities and a resistance from families to lumbar punctures (because of misbeliefs about the test.)”
Disease Surveillance
Awareness is key to defeat meningitis. Many countries lack strong disease surveillance systems necessary to understand the full scale of the problem and how to respond.
Professor James Stuart, chair of CoMO’s Scientific Advisory Group, summarised why disease surveillance is so important for defeating meningitis.
“1. Prevention and control. In all countries and regions of the world, we need to know the numbers of meningitis cases and deaths over time, which age groups are most affected, which organisms and which strains are making people ill. This information is essential in order to target prevention and control measures most effectively, to make sure that the right vaccines are given to those most at risk, and to check that the numbers are falling as they should.
2. Treatment. Antimicrobial resistance is rising across the globe, so that surveillance of resistance is needed to make sure that the right treatments are recommended and used.
3. Support. Surveys to understand the level of disability from meningitis around the world are very important to ensure that those affected after meningitis receive the care that they need.”
Support and care for people affected by meningitis
Even with treatment, 1 in 5 survivors of bacterial meningitis are left with serious after-effects, which can change their lives.
Meningitis doesn't just affect individuals, but also their families and loved ones. Having a network of support for people affected by meningitis and their families is vitally important because life can become completely different. Meningitis organisations all over the world do amazing work to connect people and offer valuable support services.
When Bruce Langoulant’s healthy six-month-old daughter Ashleigh was diagnosed with pneumococcal meningitis in 1989, she had to fight just to survive. The disease left her with cerebral palsy and
epilepsy. Ashleigh is also deaf and hasn’t walked or spoken a word in her life. Bruce founded the Meningitis Centre Australia to help other families affected by meningitis.
“My experience with families like my own who have suffered at the hands of meningitis is that access to people who have had a similar experience is so valuable. The emotional support and perspective this offers the newly diagnosed or bereaved is priceless in my experience and has not changed over the 28 years my wife and I have been supporting our very dependant daughter.” - Bruce Langoulant, Meningitis Centre Australia
Advocacy and Engagement
As well as offering support, meningitis organisations and advocates provide a voice for those affected and help to raise public and political awareness of meningitis.
Michael Redfearn co-founded the Meningitis Research Foundation of Canada after witnessing the devastating impact of the disease.
“As someone who lost a brilliant and talented 19-year-old student to meningitis, I am acutely aware of the need for advocacy and engagement in battling this horrific disease. The need is urgent and the message clear: we all have a responsibility to educate ourselves and others about the signs and symptoms of meningitis and how to help prevent it. World Meningitis Day is a glorious opportunity to be part of a global movement in this bold struggle. Join or contribute to a meningitis awareness campaign in your community, region or country. Share important awareness and prevention tips with your family, friends and neighbours. Above all, get involved, because with meningitis, every second matters.”
"The need is urgent and the message clear" - Michael Redfearn, Meningitis Research Foundation of Canada
Reference
1.https://www.who.int/immunization/sage/meetings/2019/april/1_DEFEATING_MENINGITIS_BY_2030_A_ROADMAP_Draft_goals_and_milestones.pdf?ua=1