Advice on... Multiple sclerosis

Q: What is multiple sclerosis?

Multiple sclerosis (MS) is one of the most common disabling neurological conditions affecting young adults. It is the result of damage to myelin, the protective sheath surrounding nerve fibres in the central nervous system.

MS is usually thought of as an adult condition but both children and teenagers can develop it. There are around 100,000 people in the UK with MS and as many as five to 10 per cent experience symptoms before the age of 16.

The cause of MS is still not known and there is no cure. A combination of factors could lead to someone developing MS but it is not a hereditary or contagious condition.

Research is still continuing into all aspects of the condition.

Q: How does MS affect young people?

MS affects young people in different ways. Common symptoms include: fatigue; balance problems or dizziness; visual problems; loss of muscle strength and dexterity; anxiety, depression; and cognitive problems such as difficulty with concentration.

Most children and young people are diagnosed with relapsing remitting MS, where symptoms can flare up and then go into remission for undetermined periods of time.

Some symptoms are obvious, such as walking difficulties, but MS symptoms can also be hidden, such as pain or fatigue, and this makes it difficult for people to understand, especially those unfamiliar with MS.

Young people with MS are usually still able to go to school and carry out their usual activities, but sometimes feel tired or shaky.

Q: What treatments are available?

There are now drugs that can modify the course of MS for some people. Many drug treatments may not be licensed specifically for children or young people but they are still used with careful monitoring. As with adult MS, it can be a process of trial and error - where the effects of the drugs are carefully monitored by a GP, MS nurse or paediatric nurse who will alter the dosage accordingly.

Steroids are commonly used to treat an attack of neurological symptoms, although they do not alter the course of the condition.

Drug treatments are often most effective when combined with other approaches, such as physiotherapy. A physiotherapist might suggest exercises that concentrate on a particular area to help manage a specific effect of MS.

Q: Is the condition life-limiting?

MS is not a terminal illness. Like diabetes, it's known as a long-term or chronic condition that needs to be managed for life. Most people with MS can expect to live to an old age, with perhaps a fiveto 10-year reduction in average life expectancy.

Q: What should youth clubs do if they have a member who has MS?

Young people affected by MS might have the condition themselves or be a carer for a parent or relative.

Being aware of the issues they face will go a long way in supporting them. With the permission of the affected young person, youth workers might want to arrange an activity or event to highlight the issues MS raises. Someone from the local MS Society branch might be willing to run this session.

Whether a young person has MS or is a carer, they can often feel frustrated, or different to the others. This can lead to bullying, bad behaviour, withdrawal or a reluctance to talk about what's going on. They may even go into denial and just pretend that nothing is wrong.

Youth workers should listen carefully to what a young person says and be alert for signs of depression or an inability to cope.

While care should be taken to accommodate their needs, not every young person would necessarily want to be singled out and have their differences highlighted in front of their peers — youth workers need to ensure that they feel in control of their situation.

Toral Pattni is press officer at the MS Society

MORE INFORMATION

• MS Society runs a free, confidential helpline for advice and information about MS on 0808 800 8000, Monday to Friday from 9am to 9pm and has more information and support for children and young people affected by MS online www.mssociety.org.uk
• Young MS is a dual-use website from the MS Society for children and teenagers affected by MS www.youngms.org.uk
• Young Carers is a website to provide support for young carers www.youngcarers.net