Foreword & Introduction to Handbook

Foreword to the Welsh Edition of Kids With Arthritis, A guide for families.

Some people may know of a child diagnosed with arthritis, but how many actually understand what arthritis is and what it’s like to live with juvenile idiopathic arthritis? A child’s (and the families!) life can be challenging enough without the added impact of coping with a fluctuating and often hidden condition. The affects of arthritis can dictate the choice of patterns of living for the whole family.

At Arthritis Care we believe that individuals who live with arthritis and those who care for them should have the right information, at the right time to enable them to make informed choices and to feel in control.

Kids with Arthritis meets this need by providing a positive and comprehensive workbook, outlining practical information, support and advice for a family faced with the many challenges involved in the care and support of a child with arthritis.

Children living with arthritis need to be able to flourish and grow into independent people, having the same opportunities and life choices as everyone else. This means that everyone involved in their care and treatment needs to work in partnership and be fully informed. As a young person living with arthritis myself I believe this guide will help to achieve this.

Mary Cowern
Chair of Arthritis Care Young Persons & Families Advisory Group
Arthritis Care Wales Trustee

Introduction for healthcare professionals

This handbook is written primarily for families of children with arthritis, and brings together contributions from nearly sixty families. It offers a rare and truthful glimpse into the daily life of these families, and combines a decade’s PhD research with families of children who attend a leading paediatric rheumatology centre. This edition offers new information about medicines, food and food supplements and foot care.

The feedback from the first edition emphasised that families wanted to know the full facts about this disease because ‘to be forewarned is to be forearmed’. We continue to welcome feedback and ideas for extra sections. Some small sections may be hard to read, but families have said that these crucial pages helped them talk to their children with new insight and depth. Families have said they appreciate the handbook’s practical ideas, shared experiences with others, and most of all the encouragement to keep going.

You have chosen your professional path, developed your expertise and are surrounded by informed colleagues. Families made no such choices – their child developed arthritis and they are suddenly faced with a life-changing challenge. Please help families marshal their skills and courage and encourage them to build their own expertise. One way to do so is to make a copy of this handbook available to them.

Kids with Arthritis
A guide for families

Carrie Britton PhD

Illustrated and edited by Mark Rigby

Third Edition 2005
Second Edition 2005
(First published in 2003)

Published in the United Kingdom in 2005 by
Kids with Arthritis
P O Box 58, Hove,
East Sussex, BN3 5WN

www.kidswitharthritis.org

Registered Charity No 1109407 (United Kingdom)

Copies of this publication are available directly from the publisher.

Introduction for Parents

Someone once compared having a child with special needs with looking forward to a holiday in Italy, but finding that the plane landed on the moon instead. Not what you had in mind! But when your child develops arthritis there is no holiday, and the impact upon the family can be devastating. One father described caring for a child with arthritis as "like living on a volcano, you can feel it rumbling all the time, but you don’t know when it’s next going to explode and take you and your family with it." Over the years, helping your family endure the wide-ranging consequences of living on that volcano can be exhausting.

But there are new developments in treatments and attitudes so that you can make informed choices about how your family copes with this situation. You can make a difference to the outcome, and you can help prevent some of the worst consequences of childhood arthritis. You can get the help you need, and you can help children with arthritis and their brothers and sisters achieve fulfilling and creative lives. One parent described this perspective well:

"My concern is not so much the practical problems – the services, the respite care or anything else. It’s that our daughter develops as someone who is rounded. I’ve come across disabled people who are the most funny, sociable, kind and brave people, and other people who really don’t suffer that much but make a real mountain out of it.

So my concern is with her character: how she grows. It’s that while she’s well, she grows straight and healthy, not straight physically, but well balanced, without a chip on her shoulder, and without being fearful of what might happen. Because that feeling can blight you. You’ve got to let her take risks and grow up in the sunshine and not under a cloud."

For most families, the experience of caring for a child with arthritis is life changing for each family member. Families said that they learnt about kindness, about the strengths of their children, about themselves, and upon whom they could or could not depend. People said that they gained a new compassion for others who suffer, and some families reported that this was why their well children later chose careers that involved helping others.

This book includes experiences from a cross section of families whose children have experienced different forms and degrees of illness. Their research evidence provides a realistic perspective, offers hope to families of children who have just been diagnosed, and guides the delivery of meaningful support and flexible help.

Some of the experiences of families that include a child with arthritis are shared by thousands of other families whose children have different long-term illnesses or special needs. In producing this book, CHOICES worked in association with aMAZE. aMAZE is a parent-led charity that has a proven track record in producing excellent family-friendly information and for supporting families of children with any special need in Brighton and Hove. CHOICES is indebted to the many parents, trustees and colleagues at aMAZE for their expertise in helping to write and publish this book.

How to use this book

Arthritis in children covers nearly twenty different disease subgroups. This book will concentrate on the main things that most families experience. Our child and our family are each unique and arthritis affects each child differently. But there are important experiences we share. Like other parent-authors, the author has written this book to share ideas, information and suggestions so that you can make your own choices. Use and adapt what you think will work for your child and situation, and seek advice from other parents and professionals.

The book brings together research material about childhood arthritis, and information about current services and organisations that can help you. It reports how other families cope with childhood arthritis. Each chapter can be read separately or all together. You may want to read some sections only when they become relevant to you. Some people need to look ahead while others prefer to concentrate on the challenges of today.

The author has used the terms father, mother, brother, sister, grandparents in order to simply present topics but she recognises that modern families come in all shapes and sizes. The author hopes that different people, whatever their relationship to the child with arthritis, will find this book informative and encouraging.

We hope that the experiences of family members (as discussed in chapters Twelve to Fifteen) will encourage you because many other people in the same situation share your feelings. The material may also promote discussion between different family members, and help them express how they feel.

We hope too that it will help people glimpse at what life is like for families such as ours.