Most people don’t know about the life-long effects meningitis can have, reports Meningitis Research Foundation (MRF) during Meningitis Awareness Week (16th – 22nd September).
A new survey from MRF has found that although many are aware that meningitis can kill, most don’t know that meningitis can leave people with severe and life-long health consequences.
The survey commissioned by MRF found that only a minority of the Irish population know about most of the long-term possible consequences of meningitis.
Around nine out of ten (88%) of those surveyed didn’t know deafness was a common after-effect of meningitis, despite it being a leading cause of acquired hearing loss. Most people also under-estimated how many people were left with severe impairments as a result of the disease. Three-quarters (75%) of those surveyed didn’t know that depression or anxiety can be a result of meningitis. Two-thirds (66%) did not know that problems with muscles or bones was a possible after-effect.
During Meningitis Awareness Week 2019, MRF are highlighting how after-effects can severely alter lives following meningitis. The charity are also campaigning to improve support for people affected by the disease.
CEO of MRF, Vinny Smith said: “While many are aware that meningitis costs lives, fewer people know about the damage the disease can do to people’s long-term health and their future. The cost to people can be immense. Sadly, some people will never fully recover, so the right support to people affected by the disease is essential. That’s why we’re also welcoming the introduction of the Men ACWY vaccine for first-year secondary students during this school year. By getting the free Men ACWY vaccine, young people are not only protecting themselves from a potentially deadly disease, but also protecting others by helping to stop the spread of meningitis.’’
‘’MRF is here for everyone affected by meningitis. We’re calling for ongoing support from specialist care services, and although we know some people receive excellent post-meningitis care, we want that help to be available to all. MRF-funded research has shown how important effective aftercare is to quality of life. That’s why MRF offers free support services. Those who contact our support team tell us it is vital for their recovery and helps them feel less isolated.”
Without effective support, survivors can struggle. In 2003, Emma’s sister Gillian Hill fell ill with meningitis at the age of 25. She had all the usual signs of a migraine – vomiting, headache and dislike of bright lights. However, Gillian did not develop a rash. As her symptoms grew more severe, Gillian was rushed to hospital. She suffered cardiac arrest and later a series of mini-strokes. Gillian was on life support for 7 months. However, that was only the start of her battle. Gillian fought the after-effects of the disease for ten years. She was determined to regain her independence, despite the devastation meningitis had caused. Emma and her family met many medical and care professionals along the way who helped immensely with Gillian’s recovery. However, the family also struggled with getting Gillian the services she needed. Emma describes the courageous journey her sister had with meningitis:
‘‘Gillian was in hospital for a full year and a half. She regained some physical movements and had a tracheotomy in place which meant she could not eat. For a long time at the beginning, she could not speak with sound. Lip reading was extremely frustrating for all. As a family, my mother gave up her life for Gillian, caring for her, fighting for her. As Gillian was sick for so long, some doctors nearly didn’t bother with her. But my Mam was a trooper, and she knew she could not leave her daughter like this. Her mental support to Gillian also helped her through it. Being told there’s no point or she’ll get no better was so hard to hear. Gillian would not accept this and neither would Mam.’’
Following a ten-year struggle, Gillian sadly passed away from pneumonia in 2013, at the age of 34.
Emma describes her sister’s frustration at what meningitis had taken from her:
‘’Everyone around her was getting on with their lives and she was so stuck. The hardest part of it all was that mentally, Gillian was perfect. She knew exactly what she had lost, exactly what she was left with. Physically, her body just wouldn’t cooperate. She worked so hard to regain her life, but was so utterly depressed and frustrated at every point of life now.’’
By sharing Gillian’s story, Emma hopes to highlight the serious after-effects of meningitis, promote awareness of the serious nature of this disease, and encourage people to take up any vaccines available to them.
The Men ACWY vaccine is being added to the School Vaccination Programme this year for first-year secondary school students. The Men ACWY vaccine helps protects against four causes of meningitis (Men A, C, W and Y). MRF urges parents of students in their first year of secondary school to ensure their child gets the vaccine when it is available, and for anyone who is eligible to get vaccines to avail of them. The Men ACWY vaccine will be administered later in the 2019-2020 school year.
Visit meningitis.org for more information on support, vaccines and how to donate to help fund MRF’s support services, research and campaigning.
Meningitis Awareness Week is MRF’s awareness week. For enquiries or interviews, contact Gerda Berry, MRF Support and Communications Officer atgro.s1571519424itign1571519424inem@1571519424badre1571519424g1571519424 or on 01 819 6931. Alternatively, contact Sophie Beyer, MRF Media Relations Manager at gro.s1571519424itign1571519424inem@1571519424beihp1571519424oS1571519424 or on 0044 333 4056251 / 0044 7875 498047
Notes to Editors
Meningitis Research Foundation is a leading Irish, U.K and international charity working to defeat meningitis wherever it exists. We fund and support vital scientific research. We campaign and provide information to the public, health professionals and researchers that promotes prevention, early diagnosis and treatment, and raises awareness of the disease. We also provide direct support and ongoing personal help to individuals and families affected, whether they are living with impairment caused by the diseases or coping with the death of a loved one. See www.meningitis.org
Meningitis is an infection that causes swelling of the lining of the brain, which can result in septicaemia. One in ten people die, one in five are left with severe impairments and one-third of survivors are left with long-term complications.
There are other, rarer, forms of the disease. Viral meningitis is more common, but since people can recover from the viral form without medical treatment it is difficult to estimate how many cases occur each year. Viral meningitis rarely results in septicaemia or death. It can however leave sufferers with deafness, cognitive impairment, and a study published in 2018 has shown depression and anxiety is one of the possible outcomes.
Irish survey of 500 people
Research conducted by OnePoll of 500 Irish adults in August 2019.
The report also showed that relatively common health consequences like poorer mental health and memory loss are not widely known. These largely invisible health effects still have serious consequences on survivors’ lives. Nearly 68% of those surveyed didn’t know meningitis can cause blindness; 75% didn’t know that depression or anxiety can be a result of meningitis (as noted in the press release above); nearly 85% didn’t know about tinnitus; over 70% didn’t know about memory loss; and over 75% didn’t know meningitis can cause learning difficulties.