Children struck down with MS

Published on Sunday 26 April 2009 22:40

HUNDREDS of children in the UK could be experiencing early symptoms of multiple sclerosis but are going undiagnosed because of lack of awareness, campaigners warned yesterday.

The majority of people believe MS – which affects more than 10,500 individuals in Scotland – only strikes in older age groups. But it is estimated that up to 10 per cent of people could have had their first symptoms of the debilitating condition under the age of 16 – and children as young as 13 months have been known to experience MS symptoms.

It is thought that earlier diagnosis and treatment could help slow down the progression of the disease.

The MS Society is hoping to raise awareness of the condition in children and teenagers as part of MS week, which starts today, challenging the assumption that it is a condition which only affects older people.

Dr Doug Brown, research manager at the society, said that without raising awareness, it was difficult to know exactly how many cases of MS began in childhood. "There are estimates that around 10 per cent of adults who have MS could have their first MS episode in childhood," he said.

"Because of the lack of awareness that children can develop MS, there is a lack of awareness among professionals who don't think of MS if a child is diagnosed with particular symptoms. We hope to raise this awareness."

Dr Brown said that around 250 children a year were estimated to suffer a demyelinating episode – a first symptom of MS where the substance myelin is lost from nerve fibres.

A new study, funded with 400,000 from the MS Society and Action Medical Research, has recently been launched in the UK to try to discover the extent of MS in children.

Symptoms can include problems with memory, concentration and movement. Not all those who experience demyelination will go on to develop MS, but the new study will try to find out how many children do.

Dr Brown said symptoms in children tended to be less severe than in adults, which could add to the confusion at diagnosis.

"It is a difficult time for children because they are at school, they could be in their adolescent years. There's a lot going on and it is really quite tricky.

"If a diagnosis and symptoms of MS come along, then it can really be quite devastating for the children and their families. They may not have even heard of MS before and don't know how to cope with MS in a child.

"To have a child experiencing symptoms of MS, such as extreme fatigue and sight loss, that is quite worrying."

A new advertising campaign by the MS Society has been launched to combat some of the myths about the condition, including the assumption that it does not affect children.

Dr Brown also said that in school, a child suffering fatigue caused by MS could simply be labelled lazy. "So much happens in childhood that parents and children may just think that's normal and may not seek medical advice for it," he said.

"We have to identify these children and raise awareness among the public and the medical profession.

"There is an argument that the earlier you start treatment, with the current therapies, the slower the MS will progress."

Dr Evangeline Wassmer, who is leading the research, 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 a valuable long-term study."

'I thought MS was something that affected older people'

AMY Ironmonger has just started her dream job, looking after children on their holidays abroad.

But when she was diagnosed with multiple sclerosis, she never thought she would be able to follow her ideal career.

Amy, now 19, was diagnosed just after her 18th birthday, following a series of tests which started when she was 17.

"I was told I had a lot of scar tissue on my brain so I had had it for a while, but just never went to the doctors about anything," she said.

With hindsight, Amy can see the symptoms of clumsiness in her childhood which were likely to be due to the early stages of MS.

But she was finally diagnosed after having a fall in the bath.

"I fell and banged my arm and my head and then when I got out of the bath I fell down the stairs," she said.

"I was sitting at work the next day and I was sitting at my computer and I noticed that it was a bit blurry. I tried moving it and it did not work. I saw an optician and they recommended I see a doctor."

Eventually a CT scan showed up inflammation on her brain and an MRI scan confirmed it as MS.

"I did not have a clue what MS was when I was told about it. All I thought was that it was probably something that affected older people and I was young."

Amy has gone on to try various treatments for her condition, but is now taking a break from them while she works in Portugal as a children's rep.