Psoriasis can be a truly devastating disease, as it not only affects your health but can also have a severe impact on how you live your life. Many people with psoriasis experience social stigmatization and discrimination on a more or less daily basis, in a wide range of settings; at school, at work, at the gym, in public bath houses. In some countries people with psoriasis suffer even more deeply, as they are ostracized, humiliated or even shut out from society when their disease is confused with HIV/AIDS, syphilis or even leprosy. The misconception that psoriasis is an infectious disease, or that a person who has psoriasis isn't hygienic, is what commonly leads to this isolating behaviour.
A vicious cycle
Knowing this it isn't difficult to understand that stigmatization and discrimination can lead to a vicious cycle of lower education, lower income, and sub-optimal living conditions and health care. Receiving sub- standard health care can lead to even larger health problems and complications, which might result in loss of income and even, in some severe cases, life. A lack of understanding and awareness among the public, but also in the health care system and among the ranks of public officials makes it necessary to take action on many levels. Policy makers and community leaders must be made aware of the problems of stigmatization and discrimination; health care providers have to consider all aspects of psoriasis and take a gathered approach on this multi-faceted disease, and the general public needs to be informed about the facts. Change must come both from the community, and the individual.
The IFPA Stigmatization and Discrimination Survey
IFPA has asked its 44 member associations to conduct a survey on stigmatization and discrimination in their countries, to highlight where the main problem areas are, and what can be done about them. Preliminary results show, for example, that social stigmatization is a major problem for many young people in school, and that they refrain from taking part in many activities as a result, or are even discouraged to participate. Action needs to be taken so that these young people, and others, do not suffer needlessly because of myths and misconceptions regarding their disease. Results of the survey will be presented at the 3rd World Psoriasis & Psoriatic Arthritis Conference in Stockholm in June 2012.
World Psoriasis Day World
Psoriasis Day, October 29, is an international event to raise awareness of psoriasis and psoriatic arthritis. With activities on all inhabited continents, it sets out to give people with psoriasis a global voice so that they will be heard and, hopefully, also understood, by health authorities, policy makers and the public.
International Federation of Psoriasis Associations