Lupus in young people
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 contact firstname.lastname@example.org. for a free copy.
“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.
SECURE FORUM FOR YOUNG PEOPLE WITH LUPUS
LUPUS UK now has a secure forum 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@example.com
UK JSLE 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.
***Please note that this article is written for informational purposes only and should not be a substitute for professional medical advice or treatment. Do not delay seeking or disregard medical advice based on information here. Always seek the advice of your local family physician or other qualified health professional before starting any new treatment or making any changes to existing treatment. It is also advisable to consult a medical professional before making any changes to diet or starting complementary remedies, which may interact with other medications.***