"It didn’t take away my will to live or my happiness” - Paralympian and meningitis survivor shares message of hope as survey reveals parents fears around life-long disabilities caused by meningitis

Almost half (48%) of UK parents are concerned that meningitis could cause life-long disabilities, despite one in three (33%) being unaware of what these may be, according to new survey findings released to mark World Meningitis Day (5^th October).

The YouGov survey, carried out on behalf of Meningitis Research Foundation, found that despite it being a fear for many, only 7% could identify all the potential disabilities caused by the disease.

Across the world, bacterial meningitis (the most serious form of the disease) kills 1 in 10 people who contract it, and 1 in 5 meningitis survivors have their lives changed forever after a diagnosis. The survey of 1,402 UK-based parents, with children up to the age of 25, testing awareness levels around meningitis, was carried out to mark World Meningitis Day (5th October 2023) – the annual moment to unite against meningitis to prevent future cases and save lives.

Problems with movement and co-ordination (42%) and limb loss (41%) topped the poll as the most recognised disabilities caused by meningitis, with mums almost twice as likely to know this could be an after effect compared to dads (52% versus 27% respectively). But only one in five (20%) were aware of epilepsy and behavioural and emotional problems, which had the lowest levels of awareness followed by water in the brain (24%), balance problems (25%) and sight loss (29%). This is despite meningitis being the fourth largest cause of healthy life lost to neurological disorders, as reported by the World Health Organization’s Global Action Plan on epilepsy and other neurological disorders.

In response to the survey’s findings, Meningitis Research Foundation is keen to foster a greater understanding about the many outcomes of meningitis and to share learning on how life can begin again.

That’s why today, on World Meningitis Day (5^th October), the charity has launched Meningitis in your words (a digital collection of meningitis experiences from across the world) and is calling for 2,030 people to share their story.

Raising awareness is one of the key aspects of the World Health Organization’s (WHO) Global Road Map to Defeat Meningitis by 2030. This collection of online testimony, which will be the largest in the world if it reaches its goal of 2,030 contributions, will form an invaluable asset in helping tackle the disease through improved understanding. Each submission details, in their own words, people's experiences of meningitis and how they have moved their lives forward.

Photo credit - Ilaria Cariello

Among those sharing their story is Italian Paralympic athlete, rock climber and adventurer, Andrea Lanfri, who lost both of his legs and seven fingers after contracting meningitis in 2015. He spent four weeks in a coma and was hospitalised for five months, during which time the doctors had to amputate to save his life. He has since gone on to create a new life as an award-winning athlete and mountaineer. In 2022, he became the first athlete with multiple amputations to reach the summit of Mount Everest.

He said: “When I woke up from the coma, in the hospital, even though the doctors hadn't yet amputated, I already knew deep down that I most likely wouldn't leave the hospital just like I entered it.

“I didn't come out unscathed from this battle, the meningococcus took away my legs and seven of my fingers, but it didn't take away my will to live, my happiness, my incredible fortitude, which allowed me to transform this experience into a further push forward, into power.

“My life will never be the same because I do not do the same things as before, but many, many more. I always share my experience to motivate people to overcome life's difficulties, big or small, to show that the limits are not always real.”

Vinny Smith, Chief Executive of Meningitis Research Foundation, said: “It’s true, that for many who survive meningitis, they live with life-changing outcomes. But for every family and every community touched by meningitis, there is light ahead. There is a Global Road Map to Defeat Meningitis by 2030, which will save lives and significantly reduce disabilities caused by meningitis.

“For those who survive with life-changing impacts, adjusting to a life that may look different to before can be a long and difficult journey. But it’s important to know, there is hope. We know from other meningitis survivors’ experiences, and as Andrea’s story shows, life can begin again. It’s also vital that those facing challenging times know they are not on their own. This is why we are aiming to bring together the largest collection of meningitis experiences, told by people in their own words, to foster greater understanding of this complicated disease, to share how others have moved forward and ensure that those who have experienced the impact of a meningitis diagnosis know they are never alone.”

To read Andrea story in his own words, visit: https://www.meningitis.org/meningitis-in-your-words/andrea-lanfri

If you have a meningitis story to share, and would like to be one of the 2,030 voices for 2030, go to: Meningitis in your words | Meningitis Research Foundation.

For more information about World Meningitis Day and other ways to get involved in the global effort to defeat meningitis, visit worldmeningitisday.org.

All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 4578 adults, of whom 1,402 were parents of children aged 25 or under. Fieldwork was undertaken between 11th - 13th September 2023. The survey was carried out online. The figures have been weighted and are representative of all UK adults (aged 18+).