A Young Person’s Guide

This site is intended for healthcare professionals as a useful source of information on the diagnosis, treatment and support of patients with lupus and related connective tissue diseases.


This guide is intended to help you understand more about lupus. You may have wondered why you need blood tests or why you have to take medicines. Understanding these and other issues may help you feel less worried and allow you to take control over your disease.

Your parents may also want to read this booklet so they too will have a better understanding of lupus. However it is important to remember that this is your illness and you are ultimately responsible for looking after your own health.
Friends and family are very important to you. Having lupus may however make you feel less good about yourself at times. You may not know how to handle aspects of your disease and treatment around your friends. The tips and suggestions in this booklet will help you face these daily challenges.

If you have just heard you have lupus, you may find reading all this information overwhelming. You can just read it gradually, when certain questions or issues arise.

Please remember your family, friends and hospital team are the best people to talk to and help support you at any time.

Section Contents


• Thanks to Natalie, Jake and April who have told their stories.
• Special thanks to Jenny Tekano, Clinical Nurse Specialist at the British Columbia Children's Hospital in Vancouver, Canada who has kindly allowed us to use a similar format and adapt the Canadian "My Lupus: What I need to know" information booklet for use in the UK.
• Gill Jackson, Pam Whitworth, Nick Wilkinson, Micheal Beresford and Jane Dunnage (members of the Juvenile Systemic Lupus Erythematosus Study Group) have worked on the English edition of this book.
• To all the clinicians (including Jane McDonagh), nurses, parents and particularly the patients who have kindly commented and suggested ideas for this booklet.