Why Does #AllMeningitisMatter?

24 April 2018

Written by Becky Parry

Today, on World Meningitis Day, we will join with hundreds of thousands of people from around the world to share the message that #AllMeningitisMatters.

There are 4 types of meningitis: bacterial, viral, fungal and parasitic. As there are several different causes of bacterial and viral meningitis, multiple vaccines are needed to help protect against it. There are also forms that are not currently vaccine preventable. For example, pneumococcal meningitis can be caused by more than 90 strains of the bacteria and vaccines can only protect against up to 23 strains.

We hear all too frequently that people thought they or a relative were protected from meningitis because they’d had their ‘meningitis jab’, and so when they become ill, they do not think of meningitis. Since not all types of meningitis are vaccine preventable, knowing the signs and symptoms of meningitis is crucial.

CoMO's #AllMeningitisMatters video

To mark this year’s World Meningitis Day, 4 individuals from around the world have shared how different types of meningitis have touched their lives.

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Alex's Story - USA

In 2013, I was diagnosed with viral meningitis. My family watched as I went from having flu-like symptoms to being in a coma in less than twenty-four hours. After waking up several days later, I began to slowly recover. I was sent home, but relapsed a month later – I had a grand mal seizure which I did not wake up from for twenty-six hours. It has been many years since I was first diagnosed, and I still have side effects such as loss of memory from before I was sick and no sense of smell.

I know that I am so lucky to be here to share my story, and I hope that by sharing my experience I can make a difference. I created the Lion Heart Challenge to raise awareness of all types of meningitis because I want everyone to be able to recognize the symptoms and get help early. This is a disease that affects so many people, and it’s time to come together and put an end to its devastating consequences.

This year for the Lion Heart Challenge, we designed a shirt to raise money and awareness for meningitis, and we will be donating 100% to the Confederation of Meningitis Organisations. You can purchase the t-shirts and donate today here.

Jane's Story - UK

I founded UK charity Group B Strep Support after my one-day old son Theo died from infection in 1996. We later discovered he’d had a group B Strep infection, something only a handful of health professionals, let alone parents, knew about at the time.

Jane Plub, Executive Director and Founder of Group B Strep Support

Group B Streptococcus (GBS) is the most common cause of life-threatening infection in newborn babies, causing sepsis, pneumonia and/or meningitis. Most babies recover from the infection, but worldwide, GBS causes around 150,000 stillbirths and infant deaths each year.

A non-invasive test late in pregnancy can detect if a woman’s carrying the bacteria. If she is, she can have simple antibiotics during labour. This reduces the chance of her baby developing GBS infection by 80-90%: from around 1 in 400 babies, to around 1 in 4,000. Countries that routinely offer pregnant women this test have seen their rates of GBS infection in newborn babies fall dramatically. Sadly, unlike most developed countries, the UK has yet to introduce this as standard, and the rate of GBS infection in babies has increased significantly.

Work is going on around the world to develop a vaccine. One day, this will prevent GBS infections not only in newborn babies, but also stillbirths and later infections. The vaccine is at least 5, and probably 10, years away. It can’t come too soon!

In the meantime, all at Group B Strep Support are focused on raising awareness, educating health professionals, supporting families, and campaigning to improve the prevention and treatment of these potentially devastating infections in babies.

Daniel’s Story - UK

I had had an incredibly intense headache for a few days that wouldn’t go away. I haven’t taken a sick day in a long time, but it was so bad that I took an afternoon off work. I went to see my local GP and was told I had ‘the flu’. Thinking it was the flu, I went home and slept for the next four days. My headache was getting steadily worse, with waves of acute pain. A couple of days later, I had a seizure in bed. Luckily my girlfriend was there, and she called an ambulance. The paramedics noted that I was struggling to walk, unbalanced and had issues with vision. They took me to the local A&E, and I then spent the next two months bed ridden in hospital with Cryptococcal Meningitis.

The Cryptococcus bacteria caused a build-up of spinal fluid around my brain, causing the intense headaches. It also put pressure on various nerves, leading to the loss of use of my right leg, problems with facial muscles and the optic nerve. The pressure had to be released via daily lumbar punctures , a spinal drain, an external drain from my brain and a brain fluid shunt. After trial and error, the pressure build up is now being dealt with by the shunt and will continue to do so for the foreseeable future.

I’m out of hospital now, in recovery and doing well. I have to take lots of medication to deal with the Cryptococcus infection, but my leg is working again, my vision is back to normal and I’m getting stronger every day. Soon this will all be a distant memory.

Cameron and Jane’s story – Australia

Cameron[1] was 5 ½ months old when he developed Pneumococcal Meningitis in a remote country town in Western Australia. After being unwell for several days with a fever, general lethargy, a disinterest in feeding, diarrhea, vomiting, a distinctive cry and arching of his back, Cameron lapsed into a coma and seizure. Cameron was initially misdiagnosed with a bowel infection but after visiting 1 doctor’s surgery, 3 hospitals, 4 ambulances, 2 Royal Flying Doctor flights and 3 emergency rooms, he was admitted to an ICU and diagnosed with pneumococcal meningitis.

Cameron a few days before he fell ill, and in the ICU after being diagnosed with pneumococcal meningitis

Cameron survived, but with life changing after effects. He sustained severe brain damage, significant loss of muscle strength, total deafness in one ear, dyspraxia, a wandering eye and life threatening epilepsy. Cameron’s abilities were less than a new born; he even had to learn to suck again.

These days Cameron is a grown man who is non-verbal, not toilet trained and needs continual supervision to keep him safe. He is similar to a toddler, although he is 22 years old. He loves life and spreads love with everyone he meets, but he will never live an independent life, work a paid job, marry or have children. Pneumococcal meningitis stole those privileges from him.

It is nobody’s fault that Cameron developed pneumococcal meningitis. My only sadness is that there was no vaccine[2] available when Cameron was a baby and very little awareness of the signs and symptoms of meningitis so as a new mother I was not aware. Consequently, Cameron’s life was changed forever along with all of his family’s lives.

Please vaccinate and know the signs and symptoms of meningitis - do not let a preventable tragedy happen to any of your family members.

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As the stories above show, meningitis is truly indiscriminate – it can affect anyone, of any age, living anywhere in the world. If you suspect meningitis, trust your instincts and seek urgent medical attention. Meningitis can kill in less than 24 hours – so every second counts.

Often, it is not until it is too late that many people discover that several vaccines are needed to protect against the most common strains of meningitis, and that not all types are vaccine preventable. This World Meningitis Day, we urge you to check[3] whether you are up to date with your vaccination schedule, learn the signs and symptoms of meningitis, and spread the message that #AllMeningitisMatters. It could save your life, or the life of someone you love.

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Click here to view more World Meningitis Day 2018 materials.

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[1]You can read Cameron's full story here, or visit his Blog and Facebook page – This is No Ordinary Kid.

[2] As of July 1st 2018 in Australia, babies at 2 and 4 months of age will be vaccinated against pneumococcal meningitis and will then receive another dose in their second year of life.

[3] Please view your country’s vaccination schedule.

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Becky works at CoMO's Head Office in the UK and provides communications, event and administrative support. She studied Philosophy at the University of Sussex and has a Masters in Human Rights. Becky has a background in international development and has worked for a variety of charitable organisations throughout her career.