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We know first-hand that meningitis has a huge impact on many aspects of people’s lives, leaving survivors with a wide range of after-effects, both visible and invisible.
Through our ongoing research we have identified the true impact of meningitis – on the individual, their family, friends, and even our society. This research highlights the need for support for life for sufferers, clearly showing that meningitis is not a disease which disappears as quickly as it strikes.
Learning difficulties and behavioural problems can happen after meningitis, especially in babies and young children. Fortunately, many of these problems are short term and improve with time. However, long term problems, such as aggression and personality changes are often associated with acquired brain injury (ABI) this is an injury to the brain that has happened after birth. Both meningitis and septicaemia can cause an ABI,
An ABI can also cause more subtle changes, the brain takes over 20 years to fully develop, if a child or young adult has meningitis the development of the brain can be affected. The changes may not be apparent immediately after the illness; it may take months or even years before any changes are noticed.
When problems are more subtle, for example, irritability, difficulties concentrating, clumsiness, temper tantrums and sleep disorders, it is sometimes difficult to be sure that these problems are caused by meningitis. It is not always easy to get the right help and support.
Our recently completed research project, (MOSAIC) confirms that meningococcal disease (most common cause of bacterial meningitis) has a life-long impact, leaving a significant number of survivors with reduced IQ and problems with memory, concentration and planning. The research has also shown that survivors are significantly more likely to need additional educational support or experience mental health disorders and physical disability.
When learning and behavioural difficulties following meningitis are long-term, you may need expert help and support. Many professionals including GPs, paediatricians, specialist teachers and psychologists, can help to reduce problems and make life easier. Patience and understanding from family, employers, schools and those working with sufferers is vital. We have a number of resources available to help people in contact, or working with, anyone affected by meningitis, so that they understand what the changes could be after meningitis.
The National Parent Partnership Network supports and promotes the work of Parent Partnership Services across England. Parent Partnership Services offer advice and support to parents and carers of children and young people with special educational needs.
IPSEA is a national charity providing free legally based advice to families who have children with special educational needs. All our advice is given by trained volunteers.
Meningitis Now is the new name for Meningitis UK and the Meningitis Trust. Our goals remain the same – saving lives and rebuilding futures.
Life after childhood meningitis and septicaemia
Meningitis left Noah deaf and he's struggled with behavioural problems.