The young person's guide to MS
The Young Person's Guide to MS provides information to 10-16 year olds with a parent with MS.
The book was highly commended in the 2007 BMA Medical Book Awards where the judges described it as "Invaluable information, thoughtfully produced with the younger reader in mind."
Since the book was first published in 2006, we've sent out 15,000 copies to help young people understand how MS affects their family and themselves. Recently updated and reprinted for 2010, it continues to be very much in demand.
The book was written by Ali Whittam in collaboration with Kerry Mutch, an MS specialist nurse in Liverpool, who says: "It can be very lonely for teenagers who have a parent with MS. One of the aims of the book is to help young people explore their feelings about MS and how it affects them, as well as making them realise that they are not alone in the feelings that they may be experiencing at this challenging time of their lives."
This book has been produced with the help of young people who know what it is like to have a parent with MS and who share their experiences, worries and emotions about living with MS in their family.
Kerry Mutch with some of the young people who helped with the book
The book is split into two sections. The first aims to answer some of the questions young people may have about MS - what it is, symptoms and treatments.
"When I first heard that mum had MS I got really upset, but they explained it to me using a hosepipe - without MS, water flows OK, with MS, there is a kink in the hose. That really helped."
"I used to think that it was my fault that caused her to be ill, but when I talked to her, she said the attacks just come out of nowhere."
"Before I found out what was wrong with my mum I was very frightened because I thought she might die. That was a few years ago and some people didn't believe she was ill."
The second section looks at how having a parent with MS can affect young people emotionally and in terms of their social and family life.
"It makes me sad because my mum has MS. I wish I could help her more. Other children make fun of my mum, which is hurtful to me."
"Sometimes it can be embarrassing like having your mates round and having to go and help your mum with her legs, or put her shoes on."
"I'm worried because I was told that one minute you can be totally fine and the next you could have problems with MS and I'm terrified that mummy might get bad. I know the tablets are helping, but I still can't help being scared."
This section also has tips from young people for coping when they are finding things difficult and also looks at the positive influences MS has had on their lives.
"You're not alone. There are lots of other people who have parents or relatives with the illness. There are many organisations that you can talk to and MS isn't as bad as some other illnesses."
"I have a cuddle with my mum and we cry together. I could also talk to people who come to our school every Wednesday, but I haven't as yet."
"It has been a difficult journey since diagnosis and can be hard to see my mum going downhill, but I have grown up a lot and gained independence."
"My mum isn't any different because she has MS. Everyone loves my mum. I think she's GREAT."
The Young Person's Guide to MS on television
On 27 August 2006, the BBC's Newsround programme covered the book in a report by Sam Grainger. Sam's dad has MS and she was one of the contributors to the book. Sam talks about her concerns when her dad was first diagnosed and some of the problems they have had to deal with as well as some of the good things that have happened.
Watch Sam's report for Newsround - wmv format
How to get a copy of the Young Person's Guide to MS
Read, download or order a copy of The young person's guide to MS