Today’s guest blog comes from Celia Marín, Europso’s board member and psoriasis/psoriatic arthritis patient. Europso is the European umbrella organization for psoriasis and psoriatic arthritis
This year, Europso was invited to the European Patient’s Rights Day in the European Parliament, Brussels. The organization Active Citizen Network organizes this event every year and in 2015 they launched a petition to the European institutions of this day focused on the role of the innovation and prevention in the sustainability of the health system.
This is the first time that psoriasis and psoriatic arthritis patients had the opportunity to share our experiences and needs with different stakeholders in the European Parliament. In the last few years I have represented patients in Europe at a number of meetings and more and more I was sure that psoriasis should be included in the political agenda as a chronic disease and step by step we’re achieving this goal.
Psoriasis is actually well known by a lot of people but it is not a well understood disease. Many people think psoriasis is a mild disease that affects just the skin - they think psoriasis is not a big problem for patients and is a question of aesthetics. However in 2014 the World Health Organization (WHO) Assembly recognized psoriasis as a chronic, noncommunicable, painful, disfiguring, and disabling disease that affects 125 million people in the world and for which there is no cure.
Psoriasis and psoriatic arthritis have a very big impact on patients who have to live with the physical, psychological, social and economic impact on their lives as well as the stigma of a skin disease. If you live with psoriasis you may cover your skin, change your habits, and think you are not as good as everyone else - you can lose a lot of important experiences in your life. If you have psoriasis you can feel pain, shame and sadness and you may have an elevated risk of suffering a lot of comorbidities including cardiovascular diseases, diabetes, obesity, Crohn disease, heart attack, ulcerative colitis, metabolic syndrome, stroke and liver disease.
Psoriasis patients should be part of the decisions concerning the management of the disease, and need to have the right access to safe and effective treatments, elimination of social discrimination and have a normal life.
But we cannot do this alone: this is hard work that we must do together with the physicians, the pharmaceutical industry, the scientific community, the government and the policy makers and with the help of the rest of the patients and society. So we must go on working as psoriasis patient’s organization, do you want to help us?