MenB - the human cost
We know from our members just how devastating MenB is for individuals affected, their families and their friends.
It is the leading cause of bacterial meningitis in the UK and Ireland, with one in 10 cases dying while others can be left with serious disabilities including the loss of limbs, hearing loss and brain damage.
We take inspiration from our members. They are determined something positive should come out of their traumatic personal stories. They want us raise aware awareness and prevent others suffering. That’s why they ask us to share their experiences in print, in film and online.
Paralympics reporter and keen equestrian Diana, is 30 years old and building a new life without her lower legs, her fingers and with epilepsy
. A former record-breaking hurdler, she became ill in November 2007 but refuses to let her disabilities hold her back. “My life has changed a great deal, but I have learned to manage just like anyone else. The journey I have been through, and many of the people I have met, have taught me a lot about myself. There is always someone worse off.”Read Diana's story in full
Harry was just 11 years old when he died in April 2007 and since then his family and friends have raised over £100,000 for our charity, specifically for research into MenB. His parents Judi and Richard say: “Harry always had a beaming smile on his face and limitless enthusiasm for sport and life itself. He woke feeling unwell but with no obvious symptoms. We just thought it was a bug. By evening we even thought he was well enough to return to school the following day. It was not to be. Harry's short life was extinguished in a single day
.” Read Harry's story in full
Tilly was 15 months old when she was misdiagnosed with an ear infection in January 2007. She was supposed to be “as right as rain in 36 hours” but was soon fighting for her life. She ended up having both hands amputated. Her toes dropped off at home. Mum Sarah says: “I cried and cried thinking 'how is she going to get through life without hands?
’ We have watched our baby girl in so much pain and be so brave. She truly is an inspiration to everyone she meets.” Sarah Lockey talks to Meningitis Research Foundation about how having amputations as a result of meningococcal septicaemia has affected her daughter's life
David Ellson, from Northern Ireland, died of MenB in February 2002 when he was two-and-a-half years old. His mother Maureen says: “The doctor told us he was very ill and they had struggled to stabilise him after the transfer. Even at that point I couldn't believe he was going to die.
I didn't think it was possible that something so bad could happen to our family, we were good people and surely bad things don't happen to good people.”Read Maureen's story in full
Jo Lofting's son, Jack, has been severely affected
MenB by numbers
- 1761 average cases of MenB in UK per year
- 170 average cases of MenB in Ireland per year
- 10% of survivors will have a major disability including amputations, brain damage and hearing loss
- 33% of survivors will have minor deficits including psychological disorders & reduced IQ
- 7500 people, including over 5000 babies & toddlers, took part in clinical trials
- 73% in UK and 78% in Europe predicted coverage of new MenB vaccine
- 20 years since the first meningitis vaccine introduced – Hib 1992
Could this be the end of meningitis?
This vaccine is a tremendous step forward and could have a major impact on MenB, but it is unlikely to prevent all cases. This is why Meningitis Research Foundation continues to fund the development of future MenB vaccines, as well as research that will tell us what impact this vaccine is having. We hope this will bring us closer to achieving a world free from meningitis and septicaemia.Read more about the new vaccine
Why has it been so difficult to develop a MenB vaccine?
Unlike other bacteria which cause meningitis and speticaemia, the sugar coat of MenB bacteria does not trigger an immune response, because it looks like developing human brain cells. This means that the immune system does not recognise it as a foreign invader, and this protects it from attack. So using the sugar coat just does not work for MenB vaccine development.
The search for a MenB vaccine has had to focus on other elements of the surface of MenB bacteria but it has been very difficult to find elements which are both ‘visible’ to the immune system and present in every MenB strain. Even elements that are usually present are extremely variable, so the immune response against a vaccine made from one kind of MenB may not be capable of killing all the different MenB strains. Read more about the new vaccine
The journey of a new vaccine
From research to implementation. It's taken time for the new MenB vaccine to reach this stage.Read more
Counting the Cost of Meningitis
Robbie Jones is a MenB survivor. He lost both legs to the disease aged 23 months in 2008. His mum Gill backed our campaign to highlight the true cost of meningitis – which we estimate at around £3m for the lifelong care of each person seriously disabled.
With Robbie, she gathered hundreds of names for our Counting the Cost petition and they both helped deliver the petition of nearly 17,000 names to No 10 Downing Street on 17 September: “Robbie’s illness has been our worst nightmare
,” says Gill. “Which is why we committed ourselves to collecting signatures. We want to ensure everyone is aware of the dangers of the disease and that every child is protected against all types of meningitis and septicaemia.”Find out more about Counting the Cost