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The young person’s guide to MS

Open Door - August 2006 page 3

cover of the Young person's guide to MS

The MS Trust is pleased to announce that the booklet for young people who have a parent with MS, which we have worked on with MS specialist nurse Kerry Mutch, is now available.

The booklet was initially inspired by a series of 'MS in the family' workshops organised by Kerry to enable youngsters affected by MS to learn more about the condition and to explore their thoughts, concerns and emotions around living with MS in their family.

We were also very lucky to receive encouragement and support from the Previté family. For their three sons MS has always been part of the family and adjusting to their father’s use of a wheelchair has been difficult.

In the May 2005 issue of Open Door we asked for your help with this publication and we had a great response with more than 150 young people completing our questionnaire.

The booklet is primarily aimed at 10-15 year olds and is split into two sections. The first aims to answer some of the questions young people may have about MS, including:

  • What is MS?
  • Will I get MS?
  • What are the symptoms?
  • Is there a cure?

The second section looks at how having a parent with MS can affect young people. In particular it looks at:

  • Emotions
  • Extra responsibilities
  • Possible changes to social/family life
  • Why me? Why my family?

Within this section are tips from young people for coping when they are finding things difficult. It also looks at the positive influences MS has had on their lives and finishes with a section of useful sources of information and support.

As well as sharing their thoughts and experiences, young people have also been instrumental in the design and content of the booklet. It was reviewed at all stages by a readers’ panel consisting of some of the youngsters who attended a workshop or completed the questionnaire, one of whom also wrote the introduction to the booklet. The following are just a few of their comments:

  • "I liked reading the comments from other teens with parents with MS. It comforts me to know that I’m not the only kid in the world with a parent who has MS." Laura, 12
  • "I really like the 'How to cope' bit." Ben, 13
  • "It's bold and colourful. The important facts really stand out." Sam, 14
  • "Having a guide like this one would have been a great way to give me answers when I was too afraid to ask the questions." Sarah, 16

As well as answering their questions and enabling young people to explore their feelings around how MS affects them, we also hope the booklet will ensure that other young people recognise they are not alone when facing the challenges posed by MS in the family.

Read, order or download The young person's guide to MS

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