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SP0072 Challenges and potential solutions about staying in work as a young person with an rmd
  1. J Andersen1,2,3
  1. 1Lupus Europe, Romford, Essex, United Kingdom
  2. 2EULAR Young PARE, Zürich, Switzerland
  3. 3Lupus Dk, Gigtforeningen, Copenhagen, Denmark


Introduction A lot of young people with RMDs experience difficulties when it comes to staying in work after diagnosis. Some employers see a young person with an RMD-diagnosis as a liability. They are afraid it will cause a lot of difficulties with sick leaves and less work effort and in the end cost them a lot of money. Often the young person hasn't worked in the company for that many years (because of the age) and hasn't had the chance to make themselves indispensable/a valued work force yet, which makes it easy/obvious for the employer to terminate their employment.

The process of getting a diagnosis can often cause long periods of sick leave in the beginning and many employers don't understand that this will get better over time as the person gets used to having the disease and the medication has a chance to work properly.

Some young people choose not to tell their employer, that they have an illness at all, which can also be a big problem. When the employer and the work colleges don't know about the diagnosis, they cannot take special consideration to the person with the illness. Sometimes, you might a little extra break to be able to work an entire day and without it you risk wearing yourself down and having to quit the job yourself. If you choose to take the breaks yourself or perhaps fail at your job, because you try to do as much as the healthy persons, you risk getting fired, because nobody knows there is a good reason why you cannot do as much as you “should”. Young and inexperienced persons can have difficulties demanding special treatment. They are often too insecure to stand their own ground and demand special consideration.

Objectives I aim to examine the problems young people with RMDs face, when they want to stay in work and find potential solutions to these problems. How big is the problem? What can be done by the young people themselves? How can national patient organisations help them? How can EULAR PARE or other united European patient organisations help? Do we need new regulations? How do we make each country follow the EU-legislation?

Methods I have asked young people with RMDs from all across Europe about their experiences with staying in work through social media and email. I have also asked patient organisations from all of Europe through email and personal meetings about their experiences, when it comes to young people with RMDs and work.

Results The challenges differ from country to country. In some countries having an RMD is seen as a taboo, a sign of weakness. In other countries, an RMD-diagnosis makes you no different than the rest of society and the expectations to what you can do are often too high. I will attempt to make a presentation of potential solutions to the different issues. How it could help, if patient organisations spread awareness about RMDs among employers all across Europe. How, if the young person told their employer, that they have an RMD, it might help them in the long run. There are several places where young people with RMDs can get help and advise on how to act, when they want to stay in work. There already exists EU-legislation on the area, but not all EU-states respect them and adhere to them – this has to be changed.

Disclosure of Interest None declared

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