On October 29 is organized every year the World Psoriasis Day. What does this event involve ? What is it about ?
An international patient association event
Under the initiative of the International Federation of Psoriasis Association (IFPA), the World Health Organization gave its approval to organize a regular event to raise awareness about psoriasis. Since 2004, World Psoriasis Day is institutionalised as a yearly event dedicated to people affected by psoriasis or psoriatic arthritis. It is now observed in 50 countries worldwide.
This day aims at giving voices to people suffering from the disease around the world. The main goal driving this event, conceived by an international consortium of associations, is to make the national and international authorities realize that psoriasis is not taken seriously enough. This is all the more essential as the main organizer, the IFPA, is a famous advocate for the rights of people with psoriasis or psoriatic arthritis since 1971.
4 main objectives
As the IFPA explains, four main objectives can be defined:
The first goal consists of heightening awareness for two reasons : informing people affected by psoriasis that they are not alone in their situation, but also dismissing the myths on psoriasis, especially the wrong idea of a contagious disease. Second, the event is supposed to improved access to treatments by spurring healthcare systems, governments, doctors and health are professionals to enable psoriasis sufferers to access optimized and adapted therapy.
Another significant issue raised by the event is the need for an improved understanding of the disease. Indeed, it seems currently essential to inform psoriasis sufferers and the general public on the pathology so that everyone is able to discuss it openly in a climate of trust. Last, but not least, the importance of building a strong global community about psoriasis has to be pointed out. Gathering the largest possible number of psoriasis sufferers worldwide to express their concerns over their situation, in a single platform, is a key instrument to be heard by the most important decision-makers.
Campaign 2018 : Pso Serious
More specifically, association members involved in the World Psoriasis Day contribute each year to the organization of many activities:
- Free psoriasis assessment and consultations at hospitals
- Activities for children and youth
- Photo exhibitions with psoriasis-related themes
- Radio or TV interviews with patient leaders or medical experts
- Fundraising barbecues, get-togethers or concerts
- Outdoor yoga sessions for people with psoriasis
- Coverage of World Psoriasis Day by local or national media
- Awareness-raising walks or running events
- Free information events for the general public
- Lectures or seminars held by medical professionals
- Handing out flyers and brochures in public places
- Drawing competitions
- Sending out WPD postcards
Each year, a specific theme is set by the IFPA to establish a guiding principle uniting the relevant activities. In 2018, the them “Treat Psoriasis Seriously” will accompany the core messages of the information campaign. Besides, even if the campaign material is intended for members, any people interested in organising a World Psoriasis Day activity is welcome to contact the IFPA secretariat to obtain promotion material.
Make mentalities evolve
The campaign theme and the event itself emerge in a context in which psoriasis is still a social burden. “Patients with psoriasis often express frustration to me that they experience discrimination in public places and the work environment,” Dr. Joel Gelfand of the University of Pennsylvania in Philadelphia told Reuters Health in mid-September. “My patients tell me that they have been asked not to use a pool, feel embarrassed going to the hair salon or have been fired from jobs that require interaction with the public.” The survey he recently conducted, as part of a university research, points out the many stigma and discriminations psoriasis sufferers still have to face nowadays. The results of his study in the US context is indisputable : about 54 % of people said they wouldn’t want to date someone with psoriasis, 40 % said they wouldn’t want to shake hands, and 32 % said they wouldn’t want to have psoriasis patients in their homes. The most frequent stereotypes are that people with psoriasis are "insecure", "sick" and "unattractive". Also, a third of participants believe the myths that psoriasis only affects the skin and is not a serious disease.
This situation, however, is not unique to the United States. In the French context, for instance, another study carried out by Ipsos in 2015 (one of the main French polling firm) revealed that 20 % of French people think psoriasis is a contagious disease. Also, a third of the participants said they would be reluctant to kiss someone affected by psoriasis, and 44 % declared they would not be able to have sexual relations with them. In 2017, the same survey company published another inquiry showing the many difficulties psoriasis sufferers are confronted with in the field of employment and workplace integration. All these facts highlight a lingering reticence to normal behaviour towards psoriasis patients, which demonstrates a significant need for more social integration to overcome the discriminations of a misinformed society.
For more information on the event, please click here
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