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The young person’s guide to MS

Alex James, aged 21, whose mother has had multiple sclerosis (MS) throughout his life, reviews The young person’s guide to MS: a book for young people who have a parent with MS by Kerry Mutch.

A quick online search for books on MS and disability shows a multitude of titles on subjects ranging from helping people with MS and their families, to educating nurses and carers, to explaining the symptoms and relevant physiology. There is, however, an absence of books written for children whose parents have MS – a gap filled by The young person’s guide to MS.

Written by Kerry Mutch, an MS specialist nurse, the guide aims to help, educate and inform children of all ages in families affected by MS. Colourful and user-friendly throughout, the tone of the book is set from the first page, where the author takes a back seat and leaves the introduction to be written by Sarah, a 16-year-old whose dad has MS. This style eases young readers into the book and makes it instantly accessible. On every page facts and information on the topic covered are reinforced by quotes from children aged 10 to 17 in the same situation.

The book is divided into two sections, the first of which is entitled ‘Your questions answered’ and covers a range of topics from ‘What is MS?’ to ‘Will I get MS?’ and ‘Is there a cure?’ Kerry Mutch succeeds in answering these questions in a way that all children will be able to understand while, more importantly, avoiding the often problematic pitfall of talking down to or condescending the reader. Even though some of the information may not be new to older readers, they will not feel patronised or feel that they are reading a ‘kids’ book’.

After the somewhat factual first half, the second section of the book approaches MS on a more personal and practical level covering topics such as the emotional effects and the inevitable changes in family and social lives. Continuing in the same colourful and accessible style, this latter section contains more quotes than the first and concentrates more on the human aspect. This section also deals with the issue of ‘Why me? Why my family?’, questions that many children in a similar position will have asked. It is dealt with in a mature, practical manner, suggesting ways of coping and emphasising how the mix of emotions that a child might be feeling is normal and that they are not alone. Importantly, the book finishes with a section on the positive sides of MS followed by five pages of quotes from children describing how life does not necessarily change for the worse and discussing the positives that can be drawn from the experience.

This book is an invaluable resource for all children whose lives have been affected by MS. Accessible and colourful throughout, readers of all ages will be able to learn something and understand the inevitably complex mix of emotions that they are going through, while never feeling talked down to or patronised.

The young person’s guide to MS: a book for young people who have a parent with MS by Kerry Mutch. 2006. Letchworth: Multiple Sclerosis Trust. ISBN 1 904156 09 6. Available free or download from www.mstrust.org.uk.

First published in Disability, Pregnancy & Parenthood international, Issue 56, Winter 2006/2007.

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