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Childhood MS – could you help us?

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MS can begin under the age of 18 although it is not common. We understand that the possibility of MS symptoms in a child can be particularly worrying so we are improving our information for anyone concerned about childhood MS.

What is the MS Trust doing to support young people with MS?

Our recent review of MS related information aimed at those under the age of 18 has shown a gap in our provision and we are therefore working with paediatric services across the UK to develop a new resource on Childhood MS. Whilst MS is often diagnosed between the ages of 20 and 40, the number of people being diagnosed under 18 is increasing. As the possibility of MS in children is becoming more recognised, health professionals are more likely to consider this as an explanation for symptoms experienced by this age group. Given that diagnosis is often a lengthy process, this is a worrying time for both parents and children, especially as symptoms are often overlooked, or attributed to other childhood conditions.

Our initial focus will be on resources for teenagers and we are keen to work with people with MS between the ages of 12 to 18, and also with adults who were diagnosed during that time or who recognise now that their symptoms were evident at that time.

We’d like to hear from people with all different experiences of childhood MS.

Are you under 18 and diagnosed with MS?

Are you the parent of someone under 18 who has MS?

Were you diagnosed before the age of 18?

Can you trace your first symptoms back to your teenage years although your diagnosis came later?

Please tell us what would help

What’s your advice to anyone worried about childhood MS today?

What information would help someone understand childhood MS and get the support they need?

In what format do you think this information should be in? A book, web pages or something else?

You can comment in the box below or email us on infoteam@mstrust.org.uk

If you'd like to support this project, text KIMS21 £5 to 70070 to donate £5

 

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