From navigating social media to staying out of trouble at school, being a teenager is hard enough, without adding a chronic, long-term condition into the mix.

Yet between five and 10 per cent of the people living with MS in the UK today experienced their first symptoms before they even hit their 16^th birthday.

Just like their adult counterparts, one of the toughest challenges they face is fatigue – that debilitating, all out tiredness that can leave them too drained to get out of bed, let alone keep up with their school work, enjoy their hobbies or go out with their friends.

Healthcare professional working in this area are more than aware of the considerable impact this can have on youngsters just wanting a “normal” life.

Child-size FACETS?

The MS Society, which funded the work behind the FACETS (Fatigue: Applying Cognitive behavioural and Energy Effectiveness Techniques to LifeStyle) programme for adults, has now backed a similar initiative for youngsters.

With the help of a £76,279 grant from the charity, researchers from King’s College London have been working to understand how the symptoms impact on young people’s school, social and family life.

By talking to children with MS and their families, as well as those affected by conditions such as chronic fatigue syndrome, researchers discovered young people found it difficult to find the right balance between “doing” and “resting”.

They saw fatigue as something that was unpredictable and out of their control and struggled to tell their friends and teachers how they felt, meaning they were lacking in support.

What’s more, parents were concerned about the toll fatigue was taking on their children’s mental health.

Dream modification

According to the US’ National MS Society, around 30 per cent of children and young people complain of fatigue that is significant enough to “limit their daily activities”.

In a booklet intended to advise schools and teachers on how to help students living with the condition, the organisation says fatigue was often the most difficult symptom for a child to deal with.

“Many students report that the most difficult part of living with MS is lack of understanding from peers and teachers about invisible symptoms such as fatigue. ‘You look so good… you can’t be sick!’ is a common reaction,” it says.

“Fatigue can occur daily, can become worse as the day progresses, can come and go without warning, and interfere with the child’s daily routine.”

The impact this can have on their day to day lives and their future is huge – as the guide points out in heart-breaking clarity, “dreams may require modification”.

Near future intervention

The team from Kings are hoping their study, and crucially the fatigue management programme it has led to, will help.

Unveiled at the MS Frontiers event in July, the cognitive behavioural therapy-based course features a range of strategies intended to help children and young people manage their fatigue both at home and at school.

These include tips on getting a good night’s sleep, being more open about living with fatigue so they can get the help they need, and making the best use of limited energy supplies.

Similar in nature to the hugely successful FACETS, which has been implemented as far afield as Australia, this new programme is currently being evaluated by children and young people with MS before being rolled out more widely.

It marks a significant step forward for the treatment and management of paediatric onset MS – and hopes are high that it will reduce the amount of “dream modification” young people will be expected to contend with in the future.