Press Release
18 December 2023
By IFPA
IFPA, the International Federation of Psoriatic Disease Associations, has announced the launch of a data exploration tool, using findings from the global Psoriasis and Beyond study. This tool is designed to educate people living with psoriatic disease and members of the general public about the impact of psoriatic disease to help address misconceptions.
Psoriasis is a common chronic inflammatory disease that affects at least 60 million people worldwide. While the disease is characterized by patches of inflamed skin, the true impact of living with psoriasis goes far beyond the skin and is less well recognized. This tool aims to address these misconceptions and the lack of understanding both among people living with psoriatic disease and those in the general population.
The Psoriasis and Beyond is a global study that was designed to explore the impact of psoriatic disease. It surveyed 4,978 people from 20 countries around the world and captured their understanding of psoriatic disease, described the emotional and physical burden of living with the disease and examined the relationships between those living with psoriatic disease and their physicians.
The data from the study showed that the vast majority of people living with psoriatic disease are not aware of its systemic nature and associated comorbidities. For example, more than 80% of respondents were unaware of the increased risk of cardiovascular disease and diabetes associated with psoriatic disease.
The survey findings also highlighted the significant impact of psoriatic disease on a person’s quality of life, their relationships and mental health. 87% of participants said that their disease has a negative impact on their quality of life, with nearly half (48%) indicating that psoriatic disease had a very large to extremely large impact, even if they were currently experiencing mild symptoms.
The impact can also be seen in multiple aspects of their life. Psoriatic disease prevented 28% of participants from working or studying within the previous week and 31% said that they experienced more stress as a result of their psoriatic disease. 82% of respondents had experienced stigma and discrimination, with 35% who reported that they were asked if they were contagious and 32% who reported being stared at in public. 83% of respondents reported an impact on their relationships and 22% reported that they have isolated them self because of their disease.
Frida Dunger Johnsson, Executive Director, IFPA explained, “When we published the results of the Psoriasis and Beyond study in 2021, it was clear that there were many misconceptions about psoriatic disease and the impact it has that needed to be overcome. People with psoriatic disease underestimate the impact on their lives and the links to other comorbidities, and members of the public do not realize the challenges and stigma faced by people living with psoriatic disease.”
She added, “Our new education tool aims to fix these incorrect perceptions. We want to better equip people living with psoriatic disease to get the care they need and know that they are not alone. At the same time, by educating the general public on this condition and its impact, we want to encourage support for people living with psoriatic disease and prevent stigma. We believe this education tool can make a big difference to the lives of people living with psoriatic disease and we are proud as an organization to be launching it.”
The tool is available at https://ifpa-pso.com/projects/psoriasis-and-beyond and for more information about psoriasis, visit the IFPA website.
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