Resources and Information for Young People and Families
We have a range of information and resources available for young people and families impacted by lupus. You can download these resources below or contact us for a physical copy free of charge.
Transition from Paediatrics to Adult Services
Becoming a young adult can be a time with many changes and opportunities, which can be exciting in some ways and challenging in others. As you become a young adult, the children’s hospital may no longer be the best place for you to have your treatment. This interactive booklet is designed to better prepare young people for the process of transitioning to adult services from paediatrics.
My Lupus - What I Need to Know - A Young Person's Guide
Lupus UK, jointly with the UK Juvenile Systemic Lupus Erythematosus Study Group, have produced the booklet My Lupus – What I Need to Know – A Young Person’s Guide.
“I had swelled up with water in my legs, my stomach, my back and my face. In addition to this, I was put on steroids, amongst other medication, which caused me to get acne. As a sixteen year old starting a new place where I only knew about ten people, it was a nightmare situation. It took me a long time to feel confident enough to make friends.”
Information for Schools and Colleges
If you have been diagnosed with lupus it is important to tell your school or college about your condition. It is possible for them to make accommodations if you need them such as; Providing extra time in exams or to get between classes, providing a quiet place for resting if necessary and providing alternative options to external sports activities. Without them knowing, it’s hard for them to help you. With the help of the JSLE Cohort Study Group we have prepared an information sheet for teachers which outlines the ways that lupus can affect pupils and some of the ways they can help.
We are currently creating a brand new education resource for 2025. Stay tuned for more info!
Signposting
RaiIse
Improves school life and education for young people with invisible illnesses.
Teapot Trust
Transforms the lives of children and families living with long term, and often painful, health conditions through art therapy.
Versus Arthritis
Provides information about arthritis and how to support family and friends.
UCLH Centre of Adolescent Rheumatology
UCLH have a website for their Centre of Adolescent Rheumatology. The website features loads of videos of interviews with lupus and arthritis patients, talking about their experiences. It also includes a wide variety of other information including how to get involved in research studies. You can take a look at it by clicking on the button below.
UKJSLE Cohort Study Group
The UK JSLE Cohort Study and Repository aims to find out more about what causes lupus and how it affects children and young people, in order to try and develop better treatments. The Cohort Study recruits patients aged up to and including 16 years of age from more than 20 hospitals all over the UK. It started recruiting patients in 2006 and over 550 young people with lupus from across the UK have taken part so far. They have undertaken a wide range of research looking at the immune system, genetics and treatments in lupus. They publish their research in various medical journals and discuss their results with other researchers around the world to help generate new ideas on how to help look after patients with lupus. You can find out more about the study on their website:
You can read our recent newsletters and updates here:
- UK JSLE Cohort Study newsletter April 2016
- Summary of UK JSLE Cohort Study Group Away Day Jan 2016
- Short Report from ‘Lupus and You’ event in March 2016
- Short Report from ‘Lupus and You’ event in September 2016
If you are not already part of the study and would like to find out more about taking part, please ask your local rheumatology team. For additional information please contact [email protected]
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