Press release

First UK childhood MS incidence study published

18 June 2012

Researchers funded by Action Medical Research and the MS Society have found the UK has the highest reported incidence rate in the world of children who experience their first MS-like attack in childhood.

Every year in the UK around 125 children – that’s ten aged between one and 15 in every million – will experience what’s thought to be their first MS-like attack.

The ‘attack’ is often diagnosed as Clinically Isolated Syndrome (CIS), where symptoms similar to those found in MS, like problems with eyesight or numbness in the hands and feet, flare up and then disappear again.

It’s thought around one in 20 adults with MS will experience their first symptoms in childhood, but children who experience a second MS attack at a young age are usually diagnosed with childhood MS.

Researchers working at the University of Birmingham and Birmingham Children’s Hospital also discovered that:

  • the average age for the first MS-like symptom was 10 years old
  • in children aged 10 years and older, more girls than boys were affected – in keeping with the diagnosis ratio that MS affects twice as many women as men

Researchers gathered the data by surveying paediatricians and ophthalmologists from across the UK – asking them to report if they had treated children presenting MS-like symptoms. The results have been published in the journal Multiple Sclerosis and were compared with findings from similar studies carried out in Canada and Germany, which reported lower incidence rates.

Researchers hope these findings will help raise the profile of childhood MS among health professionals, potentially leading to a quicker diagnosis and more tailored support for young people.

Tracey and Richard Murdoch’s daughter Emily, from Cannock, was diagnosed with MS when she was 12 years old after years of unexplained symptoms. Emily, now 15, regularly experiences severe fatigue, muscle spasms and problems with numbness in her hands and legs. She horse rides regularly and hopes to one day compete at the Paralympic Games in the three day event (show jumping, dressage and cross country).

Tracey said: “Emily was three and a half when she had her first MS symptom but at the time we didn’t know it was MS because her doctor couldn’t explain it. We were terrified when she was diagnosed. Childhood MS is rare and there’s very little support available for teenage kids – we felt so isolated, but we got support by speaking to other families affected by MS and are now in a more positive place.”

Dr Doug Brown, Head of Biomedical Research at the MS Society, said: “Around one in 20 adults with MS experience their first symptoms in childhood, so this is an incredibly important area of research for us. Historically MS has always been considered as an older person’s condition, but we’re now seeing people diagnosed much younger, so the more we understand about childhood MS the better health professionals can be at diagnosing the condition and offering treatment and vital support to young people and their families.”

Dr Evangeline Wassmer, Paediatric Neurologist at Birmingham Children’s Hospital, who conducted the research, said: "My hope is that the acknowledgement of childhood MS in the UK will lead to early diagnosis and treatment and improve the quality of life of children with the condition".

Michael Absoud, Clinical Research Fellow at the University of Birmingham, who also worked on the study said: “This study, funded by the MS Society and Action Medical Research, will help raise awareness of childhood MS among practicing physicians. Knowing how many children are at risk of developing MS later in life will help the future design of clinical trials and further paediatric MS research.”

Multiple sclerosis is a condition of the central nervous system, causing problems with mobility and balance, memory and thinking, eyesight, bladder control and severe fatigue.

- ENDS -

Reported by the BBC:

http://www.bbc.co.uk/news/health-18461778

http://www.bbc.co.uk/news/health-18482865

NOTES TO EDITORS:

For further information please contact:
Toni Slater, Interim Communications Manager
T: 01403 327478
E: tslater@action.org.uk
W: action.org.uk

Action Medical Research - the leading UK-wide medical research charity dedicated to helping babies and children - is celebrating 60 years of vital research in 2012. We’ve been funding medical breakthroughs since we began in 1952 and have spent more than £100 million on research that has helped save thousands of children’s lives and changed many more. Today, we continue to find and fund the very best medical research to help stop the suffering of babies and children caused by disease and disability. We want to make a difference in:

• tackling premature birth and treating sick and vulnerable babies
• helping children affected by disability, disabling conditions and infections
• targeting rare diseases that together severely affect many forgotten children

But there is still so much more to do. Make 2012 a special year and help fund more life-changing research for some of the UK’s sickest babies and children.