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A Race Against Time to Take Action and #DefeatMeningitis

Today, as millions of people unite to mark World Meningitis Day (24th April), we join everyone committed to defeating meningitis to raise awareness of why we must take action now. This is the first World Meningitis Day held after the approval of the WHO’s Global Roadmap to Defeat Meningitis by 2030, an historic achievement driven by people affected and a simple wish – that no other families be affected by this devastating disease. Despite the widespread support for this plan, there is a lot that needs to happen in the next nine years and everyone has a role to play.

Meningitis is largely vaccine preventable and yet progress to reduce the number of cases is lagging behind other diseases. Compare meningitis with two other vaccine preventable diseases- measles and tetanus; between 1990 and 2019 the number of deaths caused by measles and tetanus fell 90% and 91% respectively. But for meningitis? That number is just 61%. Meningitis and neonatal sepsis combined remain the second leading infectious cause of death for children under the age of 5. Covid-19 now means there are additional challenges; millions of people worldwide have missed out on immunisations due to disrupted services and this means in future meningitis cases may start to rise as people start to gather again.

Despite the risk, not many people know about meningitis until they or someone they know has been affected. For a disease that develops very quickly, this low level of awareness can be incredibly dangerous. Just hours from presenting the initial symptoms of meningitis, it can take hold of someone’s body and shut it down. Reacting quickly and trusting your instincts is vital.

The signs and symptoms of meningitis can be easily confused with other diseases so you can #DefeatMeningitis by sharing infographics like the one above – download them (in 10 languages) for free here.

So what is meningitis?

Meningitis is the inflammation of the fluid and membranes that cover the brain and spinal cord and the most common causes are viruses or bacteria. Until a cause is known, all cases of meningitis should be treated as a medical emergency and if someone has suddenly become very ill it’s important to seek medical attention. Viral meningitis is the most common type of meningitis in adults and older children and is rarely life-threatening, although recovery can still be challenging and take some months.

Bacterial meningitis can happen to anyone of any age and can occur alongside the life-threatening condition sepsis. Sepsis is when a high amount of bacteria enters the bloodstream, triggering an overwhelming response that causes the body to damage its own tissue and organs. A shocking 1 in 10 people with bacterial meningitis die as a result, leaving their loved ones in a world of pain.

Paloma of Una Vida Por Dakota shares how her loss led her to focus on preventing the preventable in Peru.

For those who experience meningitis, either directly or indirectly, there is often a clear distinction in life before and after meningitis. For someone who’s lost a loved one to the disease, their life is irrevocably changed and they are left to learn to adapt and live without them. For those who survive, 1 in 5 are left with after effects that can include: hearing loss, vision loss, organ damage, limb loss, brain damage, depression, cerebral palsy, epilepsy and more. As meningitis is a complex disease with many possible causes and consequences, the way it affects someone is unique and yet everyone who’s had some kind of experience with it knows how scary it is.

When Sarah was 30 years old she suddenly contracted meningococcal W and sepsis and her family were told to say goodbye. Thankfully, she pulled through and advocates for greater meningitis awareness through The Sarah Joyce Project.

So how do we defeat meningitis?

Meningitis is a huge global problem and no problem of that scale has one easy solution. That’s why the WHO’s Global Roadmap outlined the following focus areas:

1) Prevention and epidemic control

2) Diagnosis and treatment

3) Disease surveillance

4) Support and care for people affected

5) Advocacy and Engagement

After the last year, the importance of prevention and epidemic control is one that cannot be underestimated. This is true for meningitis as well, but for different reasons. Meningitis affects fewer people than Covid-19 but it progresses very rapidly, leaving little time to react and seek treatment. Multiple vaccines are typically needed to prevent the most common types of meningitis and so checking in with your doctor to ensure you’ve got the maximum protection possible is important.

There are already proven benefits to increasing the availability of meningitis vaccines; introducing a MenA vaccine in the epidemic-prone region known as the Meningitis Belt in Africa (stretching from Senegal in the west to Ethiopia in the east) is estimated to have saved an astonishing 142,000 lives.[1] The benefits are present even in countries that are not prone to epidemics as cases of meningococcal meningitis type B decreased by 75% when the UK introduced the MenB vaccine.[2] With improved disease surveillance, we would also be better prepared to develop new vaccines that respond to prevalent strains of meningitis.

Unfortunately, we cannot prevent all cases of meningitis and so we need improvements in diagnosis and treatment to save lives. Some rapid diagnostic tests exist but are still too costly or aren't sensitive enough.[3] By learning the signs and symptoms, trusting your instincts and seeking a second medical opinion if necessary, you can help ensure you or a loved one is treated as soon as possible.

Even with access to quick and efficient treatment, most people affected by meningitis require support and aftercare and this can extend beyond ongoing medical assessments, with a Spanish study showing that 60% of people affected need personal and emotional support. We’re thrilled to represent 80 members in 40 countries, many of whom provide the kind of support that is so vital after a life changing event. Everyone with some experience of meningitis should know that they’re not alone and people with no knowledge of meningitis should know that, even for survivors, it’s rarely as simple as going to the hospital and getting treated.

Ongoing access to medical support and follow-up appointments can be a struggle to get at all and, even in high income countries, people often have to crowdfund for essential rehabilitative technologies – type "prosthesis" into a search engine of a fundraising platform like GoFundMe and you’ll find around 10,000 hits.[4] Studies conducted in the UK, Spain and France show that there are considerable costs associated in caring for someone affected, potentially exceeding €2 million over a lifetime.

Knowing the considerable costs – emotional, physical and financial – of meningitis may seem overwhelming but it doesn’t have to be that way. Improving advocacy and engagement is something anyone can do by raising awareness of the signs and symptoms and talking about the importance of easy access to cheap and effective vaccines and access to affordable support and aftercare services.

It is by being aware of all the many possible consequences of meningitis that has inspired Rhoda to advocate for change through the Care and Development Centre.

Rhoda is one of many people with no personal meningitis story of her own and yet she shows that being touched by other people’s experiences is sometimes all that is needed to take action and #DefeatMeningitis. One small action can make all the difference, here’s what you can do:

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