Young with Lupus
Lupus diagnosed in children or adolescents is called juvenile systemic lupus erythematosus (jSLE).
10 to 20% of all lupus diagnoses are made in childhood or adolescence. jSLE most commonly occurs between the ages of 11 and 15 and is only very rarely diagnosed before the age of 5.
You have what? Lupus ery-tery…?
Actually, it would be kind of nice to have a “wolf”!
In short: you are young, in education or training, have lots of friends, lots of hobbies, and you want to party or travel or simply enjoy a great time! But then there is this unpronounceable systemic lupus erythematosus! It throws a spanner in the works—of many plans!
By now you know what this lupus is. Thankfully there is a short form! You have got used to the medication and doctor’s appointments. You are battling the symptoms almost every day. They are simply a nuisance.
Still, you would just like to be like everyone else! There is such a huge gap between you and your peers! While your friends focus on Netflix series, the latest games or dark hip-hop—or whatever they are into right now—you are learning how the immune system works, why you should avoid the sun, and what biologics are—out of necessity, not out of interest at all!
Your strength is that you live in the here and now. You can forget the “wolf” from time to time, completely block it out. Just hang out, enjoy life.
But then when you forget the medication or were in the sun without sunscreen, your doctors remind you: “Compliance is important. That means following the therapy!” You would prefer if “compliance” were a youth word, e.g. in the sense of: we function well as a group, we respect each other.
The positive thing is
that children and adolescents today deal more openly with diversity and inclusion, and therefore also speak more openly about their illness.
However, there are also further challenges:
For all teens with chronic illnesses, compliance—i.e. adhering to treatment—is a recurring issue.
Adolescents go through an intense physical and emotional development.
Particular effects on adolescents.
Everyday school life or university studies can be made more difficult, particularly by fatigue. Fatigue and pain also make it harder for adolescents to take part in many social activities.
Adolescents with lupus often have to juggle managing their health, education and relationships. In addition, questions about identity and worries about the future can be intensified by the disease, as it can affect plans and life goals.
Would you like to do something for young people affected by lupus? So would we!
Andreas Panteli
You have probably looked it up online: Google and ChatGPT have explained lupus well to you. But you have also noticed that the texts—and even the videos—were probably made by boomers for boomers.
Lupus Suisse, too, for a long time addressed almost only adults—we would like to change that. We want self-help groups for adolescents with lupus to be established. We want more information and events to be tailored to you and other young people affected.
But we need to learn from you! We need your help to expand the services for adolescents with lupus.
Would you like to start a self-help group or your own community just for young people with lupus? Do you have topic suggestions, ideas or texts? Would you like to talk about your life with lupus in an interview?
I look forward to speaking with you!
