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. You can download a copy here, or alternatively contact [email protected] and we will be happy to post a copy free of charge.

“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.”

Lupus UK Youth is a platform designed specifically to support young people and families impacted by lupus.

Visit the Lupus UK Youth website HERE, and follow our Instagram and Facebook pages. 

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.

LUPUS UK has a secure WhatsApp Group for young people with lupus (16-26). If you’d like to chat with other understanding young people about your life with lupus, or anything else, then you can request to join. For the safety of all members you will be required to undertake an identity check. For more information about joining, please email [email protected]

Your Rheum is a group for 11 to 24 years olds across the UK with diagnosed rheumatic conditions to advise, input, and shape current adolescent and young adult rheumatology research.

The group host both face-to-face and virtual meetings for their members.