A Young Person’s Guide
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.
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.
• What Causes Lupus?
• Why Me?
• What are the Symptoms of Lupus?
• What Happens When I Am Diagnosed?
• What Laboratory Tests Are Done in Lupus?
• What Other Tests Will Be Performed?
• How Will I Get Better?
• What Happens When I Come to Clinic?
• Who Can Help Me?
• What Can I Do To Prepare To Move To Adult Services?
• Transition from Paediatric to Adult Services.
• When Should I See a Doctor?
• Managing Your Lupus
• Why Do I Feel Angry and Sad Sometimes?
• What Should I Tell My Friends?
• School / College
• Alcohol, Smoking, Drugs and Sexual Health
• What Is In The Future For Me?
• Useful Websites and Contact Numbers
Acknowledgements• 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.