Across the world, bacterial meningitis leaves 1 in 5 people with life-long disabilities. These include hearing loss, brain damage, limb loss and epilepsy.
It is one of the deadliest forms of meningitis, with the World Health Organization(WHO) estimating that around 1 in 6 people who get bacterial meningitis will die. What is less well-known is the range of disabilities it causes.
A recent scientific study by researchers from the Karolinska Institutet found that one in three children who get bacterial meningitis live with permanent neurological disabilities.
The study, which took place in Sweden, compared over 3,500 people who contracted childhood bacterial meningitis with over 32,000 matched controls from the general population.
It identified that bacterial meningitis could lead to permanent neurological impairment, such as seizures, visual or hearing impairment, behavioural disorders, or structural damage to the head.
What are the long-term effects of meningitis?
“It really does feel like a lonely place at times, having to constantly deal with something that first reared its head almost half a century ago…”
Danny M’s story, Meningitis in your words
The immediate effects of meningitis are harrowing. They can include long hospital stays and intensive care. Survivors can experience a range of disabilities, significantly altering their life. These include:
- Neurological effects: memory loss, learning difficulties, and behavioural changes are common, particularly in children who survive the disease. These can affect both educational attainment and social integration.
- Hearing loss: meningitis is one of the leading causes of acquired hearing loss in children. The damage can range from mild to profound, meaning hearing aids or cochlear implants are needed.
- Physical disabilities: these include muscle weakness, coordination problems and limb loss (sepsis leads to limb loss and is caused by the same germs as meningitis). All of these disabilities can affect the way people get around or perform day-to-day tasks.
- Visual impairments: the infection can damage the optic nerve, which may lead to partial or total blindness or other visual or sensory impairments.
According to data published in 2024, across the world, meningitis is the neurological condition with the sixth greatest number of years of life lost or adversely affected due to disability (called ‘DALYs’ - Disability Adjusted Life Years). Stroke is the first in this list, followed by neonatal encephalopathy, migraine, Alzheimer’s and other dementias, diabetic neuropathy and meningitis. At 14.5 million DALYs, meningitis is ahead of epilepsy, pre-term birth, autism and cancer of the nervous system. These findings are visualised on the Institute for Health Metrics and Evaluation website.
How can we prevent meningitis?
The fight against meningitis is gaining momentum, with the implementation of a strategic WHO-led Road Map that could avert 780,000 cases of long-lasting health conditions or impairments (called sequelae by health professionals) by 2030 1.
Having played our part in the Road Map’s inception, development and implementation since 2016, we believe it could be transformative. It could enhance the health, educational and economic prospects of those affected by meningitis, boosting quality of life for many people.
Awareness of meningitis plays a key role in this - if people don’t know what meningitis is, and when to seek preventive healthcare, we cannot protect ourselves against it.
What support is available for people living with meningitis-related disabilities?
“The Helping Hands Foundation reached his house and saw that he walked by crawling on the ground in the streets. So, they have brought a wheelchair for him … Now, life has become easier for him. Now he can come in and out of the house of his own will.”
Dr Ghulam Mustafa, Meningitis in your words, December 2023
Support for those whose lives have already been impacted by meningitis is just as critical, and a key part of the WHO’s Road Map vision. Addressing the long-term effects of meningitis means having a comprehensive approach to rehabilitation and support services, which can include:
- Early intervention programmes: to mitigate developmental delays and improve outcomes for children affected by meningitis.
- Access to affordable assistive devices: hearing aids, visual aids and mobility devices enable independence and quality of life of survivors.
- Emotional and psychological support: one-to-one support and counselling helps survivors and their families cope with the emotional and psychological aftermath of meningitis.
- Educational support: tailored educational plans, resources and settings help children academically, so they can thrive. An example of this is the CEISE – Integrated Education and Training Centre for the Deaf and Hearing in Burkina Faso. Read about its pioneering approach in the WHO’s ‘Investing to defeat meningitis and beyond’.
By investing in comprehensive care and support systems, including community-led services (like those delivered by some of our Confederation of Meningitis Organisations (CoMO) members around the world), this ensures those affected by meningitis can have full, and fulfilling, lives.
How can you get involved: fly the Meningitis Flag
Awareness and support come together in the Meningitis Flag, its para-athlete Ambassadors and our CoMO members, who alongside ourselves, collaborated with Sanofi to create the Meningitis Flag - a unifying symbol for the defeating meningitis movement.
We want its message of ‘Protect. Support. Defeat’ to be so loud people, health policy makers and governments cannot ignore the fact that action is needed now to stop the impact of meningitis.
Whether you are a meningitis survivor, someone who is caring for a meningitis survivor, or someone who believes we all have the right to a full life, you can show your support by using our Meningitis Flag awareness pack.
Help us to make this the global health priority it deserves to be, so we all get the protection and support needed to see meningitis defeated.
Resources:
Meningitis Flag awareness pack
How to access our Support Services
Coping with meningitis after effects
1 World Health Organization, ‘Investing to Defeat Meningitis and beyond’