Childhood MS under the spotlight at Children’s Hospitals | Action Medical Research

Childhood MS under the spotlight at Children’s Hospitals

24 April 2009

THE first major UK scientific study into multiple sclerosis (MS) in children will begin this week marking a significant step forward in the understanding of the debilitating condition.

The paediatric MS study led by Birmingham Children’s Hospital will follow a group of children for five years and will cost around £400,000, jointly funded by Action Medical Research and the MS Society.

Awareness of MS in children - who have been known to show symptoms at just 13 months old - is very low leading to delays in diagnosis and poor treatment and care.

It is hoped that the study will give scientists an insight into how MS progresses from an early age, and increase understanding of the condition among doctors caring for children and young people.

Action Medical Research is funding half the costs of the study as part of its strategy to focus on child health, often a neglected and underfunded area of research.

Dr Tracy Swinfield, Director of Research at Action Medical Research said: “MS in children is poorly understood and we are delighted to be supporting this major scientific study into this difficult condition.”

Biomedical Research Manager for the MS Society, Dr Doug Brown, said: “If we can pin down what happens very early on in MS, this will give us vital clues as to how the condition develops in adulthood.

“MS isn’t considered to be a childhood condition but we need to beat this misconception because it makes life tougher for those young people who live with it day in, day out.”

MS is the most common disabling neurological condition in young people but there is an assumption it is an older person’s condition and that it cannot be diagnosed in children. This is one of the many myths the MS Society hopes to dispel during MS Week (27 April to 03 May).

Current knowledge and research into the number of children affected by the condition is severely lacking, but studies so far suggest that onset of MS occurs before the age of 16 in 0.4 to 10.5 per cent of cases, which could be anything up to 9,000 people in the UK.

The study, led by Dr Evangeline Wassmer, aims to find out how many children are affected by demyelination (a first MS-like illness) and MS in the UK, and to identify which children are more likely to develop MS after an initial demyelinating event.

Dr Wassmer said: “The study will create a group of paediatric MS cases that can be followed during the course of the project and beyond into adulthood, providing the basis for an extremely valuable long-term study.”

For media enquiries please contact the either the MS Society Press Office on 020 8438 0840, or the out of hours duty press officer on 07909 851401.  Or Action Medical Research Press Office on 01403 210406 or out of hours mobile on 07983 878857.

Notes to editors:

  • The study is being led by Birmingham Children’s Hospital and other centres involved are: Oxford, Bristol, Nottingham, Evelina (London) and Great Ormond Street Hospital (London).
  • Current knowledge and research into the number of children affected by the condition is severely lacking, but studies so far suggest that onset of MS occurs before the age of 16 in 0.4 to 10.5 per cent of cases, which could be anything up to 9,000 people in the UK.
  • When asked, a large number of adults with MS remember symptoms they may have experienced when younger, even though they were not diagnosed until later in life.
  • The first case of childhood MS was diagnosed in 1922.
  • Onset of symptoms has been known to occur in a child just 13 months old and children are diagnosed, almost exclusively, with relapsing remitting MS.
  • Worldwide, the frequency of childhood MS is estimated at 1.5-2.5 per 100,000 compared to 50 per 100,000 adults.
  • The accumulation of disabilities and development of secondary progressive MS most commonly occur more than 15 years after the first MS symptoms in children.  This means children with MS have a favourable short-term outlook in terms of their condition, but 50 per cent are predicted to enter secondary progressive MS by the age of 30.

Action Medical Research:

  • Action Medical Research is a leading, national medical research charity.  For nearly 60 years we have been instrumental in significant medical breakthroughs including the development of the UK polio vaccine and ultrasound scanning in pregnancy.  Today Our research helps babies and children affected by disease and disability.
  • We are currently funding over 70 vital research projects into serious diseases and conditions, including meningitis, pneumonia, cerebral palsy and epilepsy.
  • www.action.org.uk

The MS Society:

  • The MS Society (www.mssociety.org.uk) is the UK’s largest charity dedicated to supporting everyone whose life is touched by MS, providing respite care, an award-winning freephone helpline (0808 800 8000), specialist MS nurses and funds around 50 vital MS research projects in the UK.
  • Multiple sclerosis is the most common disabling neurological disorder affecting young adults and an estimated 85,000 people in the UK have MS.
  • MS is the result of damage to myelin – the protective sheath surrounding nerve fibres of the central nervous system – which interferes with messages between the brain and the body.
  • For some people, MS is characterised by periods of relapse and remission while for others it has a progressive pattern.
  • Symptoms range from loss of sight and mobility, fatigue, depression and cognitive problems. There is no cure and few effective treatments.
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