World Meningitis Day 2019 #AfterMeningitis

24 April 2019

Today, on World Meningitis Day 2019, we’re joining thousands of others worldwide to discuss Life #AfterMeningitis.

This year we’re raising awareness of the life changing after effects and consequences of meningitis and other infections caused by meningitis bacteria. Despite the gains made over the past couple of decades, it’s still the 6th largest infectious disease killer in the world. Every year over 2.8 million people are affected and an estimated 170,000 people die. For those who lose their lives, their loved ones are left to struggle with the absence meningitis created. Patti Wukovits, RN, Executive Director of The Kimberly Coffey Foundation and co-founder of the Meningitis B Action Project had this to say:

"After losing my daughter Kimberly to meningitis B, my life changed forever. I want to make sure parents know what I know now. It's unbearable to think of losing any more children to meningococcal disease when it's now within our power to help prevent it with two separate meningococcal vaccines. One vaccine for MenACWY plus one vaccine for meningitis B."

While survivors, fortunately, outnumber those who succumb to the disease, they may also face struggles unique to how meningitis affected their bodies. Their journeys don’t end upon leaving the hospital and for many there is a clear distinction between their life before meningitis and life #AfterMeningitis.  Lives are changed forever and many survivors have to contend with one or multiple physical, neurological and emotional after effects.

These after effects may include, but are not limited to: hearing loss, memory loss, vision problems/blindness, epilepsy/seizures, cerebral palsy, organ damage, brain damage, and limb loss. These physical after effects may be temporary or permanent and can co-occur with other after effects, including emotional ones like depression, emotional changes and mood swings.

Real Life Stories #AfterMeningitis

To raise awareness of the diversity of experiences in peoples’ lives #AfterMeningitis, we asked some of our members and supporters to give us an insight into their lives #AfterMeningitis:

Everyone taking part had been affected in profoundly different ways and gave a glimpse into the impact of the disease.

For Oriana, meningitis took her sight, leading to an identity crisis as she felt alienated from her hobbies and had to put her career on pause. However, she explains in her extended video that it also shone a spotlight on what was truly important in her life and she hasn’t let sight loss stop her from drawing!

Oriana uses art to show people how her sight has changed #AfterMeningitis

Greg lost his son, who was just 20 years old. He describes his journey and how he has been engaging in vaccine advocacy and explains in his extended video about the new struggles he has encountered in the form of vaccine hesitancy.

Sarah is still battling her after effects from her experience with meningococcal W strain septicaemia, filming her portion of the video from the hospital. Despite frequent hospitalisations, her extended video shows her dedication to raising awareness and countering misconceptions of the idea that meningitis is something only babies and teenagers contract. Having contracted meningococcal disease at 30 years old herself, she aims to share the message that meningitis can happen to anyone, at any age, at any time.

For 13-year-old Tilly, she can’t remember a life before meningitis and septicaemia. Striking when she was just 15 months old, Tilly’s after effects are still affecting her and causing her to miss days of school. However her extended video shows her positivity and appreciation of the opportunities made available to her by being an ambassador for Open Bionics and helping create prosthetics for amputees like her. She was the guest of honour at the Alita premiere and is a role model for young people everywhere!

Aftercare: Assistive Technologies and Carers

Assistive technologies like Tilly’s prosthetic limbs are not just for the red carpet; they can open up a whole new world of possibilities for people with a range of disabilities. The after effects of meningitis demand the availability of assistive technologies but production has not yet met global need. For instance, 30% of bacterial meningitis survivors experience some form of hearing loss and yet the production of hearing aids, which can help with mild hearing loss, meets less than 10% of the global need.

For profound hearing loss, cochlear implants can have a transformative effect for individuals and their families. Ann-Charlotte is the mother of a child survivor of meningitis who experiences hearing loss and was the first child in Sweden to receive a cochlear implant. She had this to say about meningitis and her daughter’s life #AfterMeningitis:

”Meningitis is an appalling disease. It can cause deafness if the child survives. Cochlear implant (CI) is a treatment that can recreate a sense of hearing, but normal hearing will always be gone. Information about meningitis and vaccines is the optimal way of preventing meningitis. While my daughter lives a good life after many years as a cochlear implant-user, the journey to conquer a good life has been hard.”

When the assistive technologies are not available, inaccessible, or if the support required goes beyond assistive technologies, families can suddenly find themselves with caring responsibilities and their lives can change completely too. Bruce Langoulant, CoMO’s Vice President in the Asia Pacific region, shared a day in the life of his daughter, Ashleigh, who contracted pneumococcal meningitis at just six months old.

Ashleigh is almost 30 years old now but continues managing a wide range of after effects, including cerebral palsy, epilepsy and deafness, to name just a few. Fortunately, she is well supported by a loving family and a team of dedicated support workers – to learn more about Ashleigh watch a day in her life, boiled down to just a two minute video! View her page here with more information on her day-to-day activities.

We envision a world free of meningitis, one where survivors and those around them are properly supported, but also where there are no more new cases of meningitis.

So, what can you do?

Right now, the only way to prevent meningitis is through vaccination. There are several different vaccines needed to protect against the most common forms of meningitis and there are some that aren’t yet vaccine preventable. This is why it’s so important to speak to your healthcare provider about what vaccines are available to you but also to learn the signs and symptoms. You can download our toolkit and learn about the signs and symptoms or, better yet, share them on social media, talk to the people around you and do your own bit to raise awareness. It could save your life or the life of someone you care about.

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Click here to access CoMO's freely available resources to raise awareness in your community.

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About the Confederation of Meningitis Organisations:

The Confederation of Meningitis Organisations (CoMO) is an international member organisation working to reduce the incidence and impact of meningitis worldwide. CoMO brings together 79 patient groups, health professionals, and meningitis survivors and their families from more than 30 countries to help prevent meningitis. Our member directory can be accessed here.

For more information, please contact CoMO’s Events and Communications Officer, Nadia Vaenerberg, by emailing nadia.vaenerberg@comomeningitis.org or calling +44 333 405 6265.