PsoUng - The member association reaching youth

No young people should be alone with psoriasis

Interview with Puk Holm Hansen, Youth Coordinator at PsoUng, the youth department at the Danish Psoriasis Association, IFPA member

Young adulthood can be a challenging time for many people, and even more so for people living with psoriatic disease. They may not yet have learned how to treat the disease or they may be struggling with feelings of isolation and stigmatization. Young adulthood is a critical period in which psoriatic disease can have more impact on quality of life, compared to other periods in a person´s life (Bronckers, Van Geel, Kerhof, Jong & Seyger 2018:9). For this reason, it is especially important for patient organizations to reach youth living with psoriatic disease. In Denmark, a committee called PsoUng is doing just that. Ung means young in danish. PsoUng wants to be a network for young people with psoriatic disease; a place where they can share experiences and feel understood. A lot of young people with psoriatic disease haven´t met other young people with the condition. Being able to do so has a huge impact and is very important to combat feelings of isolation and loneliness, explains Puk Holm Hansen, who works as communications advisor at Psoriasisforeningen, the name of the Danish association, and alongside fills the role of coordinator for PsoUng.

PsoUng organizes many activities and events. The event that stands out the most and is of the greatest importance for the members is a youth weekend where they meet up from Friday until Sunday. This event takes place twice a year and includes an itinerary of disease education and overall education in dealing with the condition holistically combined with social exercises, activities as well as entertainment. Starting with dinner together on Friday, the group consisting of 15 to 20 participants in an age range from 15 to 35, get to hear a presentation about psoriatic disease from health care professionals, mainly a dermatologist often combined with e.g. a nutrionist, psychologist etc. They get to ask questions about life with this chronic disease. The group also engage in some social activities during the weekend. Puk tells me that this could be, for example, visiting a museum or trampoline park, bowling together, aquafitness or going to a spa. They usually go to a spa where there is a salt water bath. This activity in specific, is very healing for many of the participants. Many of the young participants have felt scared to reveal themselves in bathing suits, but accompanied by other young people who also have psoriatic disease, they feel encouraged to dare to do so.

When the weekend is over, the participants often feel uplifted and have renewed energy and motivation for taking care of psoriasis and of themselves.

Puk tells me that a sense of community and belonging is crucial for the quality of life of people with psoriatic disease. A sentiment that is mirrored in the slogan of PsoUng; No young people should be alone with psoriasis or psoriatic arthritis. The opportunity to be understood and connect to others with the condition is very important.

The next youth weekend that PsoUng is organizing begins on the 6^th of May. The theme for this weekend will be related to mental health.

In addition to the youth weekend, the organization also partakes in the spreading of information in schools. Parents or teachers can request a presentation from PsoUng, and a committee member will then visit the class and give a presentation with interaction and exercises. The main purpose of the visits is to increase understanding of the disease and the students’ acceptance of each other including to combat and prevent bullying. Amongst others by breaking down the still widespread misconception that psoriatic disease is contagious.