MenB - the human cost
It is thrilling to see all the hard work of our members paying dividends - but we also know from them 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.
Diana Man
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 fullHarry Mills
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 fullTilly Lockey
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 lifeDavid Ellson
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 fullNorma McCarthy
Norma, from Limerick, contracted meningococcal B meningitis at 15 years of age. All she can remember is being out having fun with a friend and the next thing finding herself in hospital feeling very confused. When she was admitted she deteriorated very quickly, her kidneys began to fail and she was put on continuous dialysis, she had to endure many skin graft operations. She was in an induced coma for four months and
when she woke her mother had to tell her the devastating news that she had lost both her legs. Norma is now 28 and living life to the full.
Jo Lofting's son, Jack, has been severely affected
Why MenB vaccine research must continue
“This vaccine is a real step forward and will have a major impact on MenB cases. However, meningitis will remain a major clinical problem and research into microbial causes continues to be a priority alongside raising public awareness of the symptoms.”
MRF Trustee Professor George Griffin, professor of Infectious Diseases and Medicine at St George’s University of London
Anticipating the first ever MenB vaccine, Chris Tang, Chair of the MRF Scientific Advisory Panel and Professor of
Infectious Diseases at Imperial College London at the Centre for
Molecular Microbiology and Infection, told us why we need to keep funding research into MenB vaccine development.
Read here
How MRF research has helped
Meningitis Research Foundation has played a crucial role in reaching this point. MenB is one of the major reasons the charity was formed and we have been in the forefront of campaigns to raise awareness and fund research.
Our funded research has demonstrated the burden of disease and need for a solution, identified antigens and developed typing systems and assays essential in enabling the evaluation of meningitis vaccines.
There was never going to be a quick solution to MenB. Vaccine development takes many years - initial research to final delivery can take up to 30 or 40 years costing hundreds of millions of pounds for the pharmaceutical companies alone. It involves many different bodies including charities like ourselves, alongside larger funding bodies, national reference laboratories and surveillance and governments.
This wonderful news is just the beginning of important research to enable implementation and evaluate impact of MenB vaccine.
Current MRF MenB research projects