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OP0152-PARE Starting A Disease Specific Youth Group on A National Level
  1. J. Andersen1,2,3
  1. 1EULAR Young PARE, Kilchberg, Switzerland
  2. 2Lupus Europe, Romford, Essex, United Kingdom
  3. 3Gigtforeningen, Gentofte, Denmark

Abstract

Background A high proportion of individuals living with lupus (SLE) are young women, aged 25 to 35. At this age, they are getting ready to “begin” life with partners, children, education and careers. For most of them, this all stops at the time of diagnosis. They have to adjust to a lifelong struggle with pain, fatigue, headaches, cognitive problems and strong medications. As a result of this autoimmune disease, it is for instance, no longer risk-free to bear a child. This has to be done in close co-operation with various health professionals, and for some women, it is not an option at all.

Objectives To help these young people to understand their disease and inspire them to live a full life, despite of coping with this incurable disease. A better understanding of the disease makes it easier to take control of treatment, and thereby having a more fulfilling life.

Methods The goal was to start a youth group within our mother organisation. Although we already have a working and active SLE group in Denmark, that has existed for 22 years, we found out, that the young people were not joining in. The issues of a lupus patient changes considerably from when you are in your 20s, to your 50s (where most of our members were at that time). As a young person, you may not be comfortable with talking about your sex life with “older” ladies. We started with a theme day about sex and partnership, only for young people, and their spouses – and this was a great success.

Results Out of this day, a Facebook group for young people (ages 18–35) was created, where the young people can discuss everything they want to. There are no taboos and people support each other with good advice or a shoulder to cry on. Besides the Facebook group, we now have a youth day with changing themes on our schedule every year. We have one person dedicated to the youth activities and this person also has a seat in our mother organisation, whereby youth issues are implemented in all our activities.

Conclusions We now have a well functioning and active youth group, where young people with lupus can support each other and raise the issues important to them.

  1. The web page of our mother association “SLE-diagnosenetværk DK”: http://sle.dk and the Facebook group “Unge med Lupus/SLE”: https://www.facebook.com/groups/1398750663726027/

Acknowledgement The support of the Danish arthritis association “Gigtforeningen” has made it possible to fund our youth projects without having to go fundraising ourselves, which we are very grateful for.

Disclosure of Interest None declared

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