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Description
Atopic dermatitis (AD) is a chronic, inflammatory, non-contagious disease of the immune system. Its prevalence has been notably increasing over the past years, especially in the western world. The disease affects 5-10% of adults and as many as 30% of children, in 3 forms: mild, moderate, or severe. Its symptoms, in particular: rash, flare-ups, intense, and persistent itching, seriously affect the patients’ and their family’s quality of life.
The main goal of the project is to encourage empowerment and social inclusion of AD patients. A survey that will address the patients’ needs will be done for the first time in Slovenia, with the help of the participatory methods, and will provide statistically relevant and comprehensive information on prevalence of AD and the quality of patients’ lives. The patients and parents of children and youngsters with AD will, in the form of focus groups, participate, in close cooperation with medical professionals, in forming a questionnaire, and by using the online sourcing method – crowdsourcing in proposing solutions for psychosocial and medical support. We will train 10 AD ambassadors who will encourage and empower other patients and parents of children and youngsters, so they can make responsible decisions concerning their health, face the disease constructively and actively. The target group are patients with AD, parents of children and youngsters with AD, the professional and the general public. Our activities will be supported by a media campaign that will address the severity of the disease and distress of patients and in doing so decrease the stigmatisation, discrimination, and marginalization of patients with AD.
Partners from Norway and Slovenia are both hospitals that are providing health care to people with AD and will help with promotion of the project and dissemination of results. They also help with connecting people with AD with the lead partner (in case of Slovenian hospital) and transfer of best practice.
Summary of project results
Atopic dermatitis is a systemic disease that manifests externally with inflammatory lesions and unbearable itching. It affects up to 20% of children and 10% of adults. The prevalence is rapidly increasing. The project aimed to empower and socially include patients with atopic dermatitis. It also included the first national research on the quality of life for patients in Slovenia.
As part of the project Look Deeper – I am more than my skin, posters and disturbing images flooded Slovenia. They depicted girls with atopic dermatitis (AD). Despite being one of the rare chronic diseases, before the project, there was no census or precise data on its prevalence in Slovenia, and so those affected still face the stigma of being "contagious."
One of the first studies on AD in Slovenia, which, in addition to the medical aspect, also covered the quality of life of those affected – including social interactions, family relationships, mental health, and financial consequences – was conducted as part of the Look Deeper – I am more than my skin project. The project brought together the non-governmental Maribor-based organization Atopica, UKC Maribor, and the University Hospital of Northern Norway. As Dr. Tina Mesarič, director of Atopica, states, AD is more than "just" a skin disease and unbearable itching: "It is a disease that destroys everything. Because of it, it''s hard to get a job, let alone keep one. The same goes for partnerships..."
With the campaign, in which girls courageously showed their faces damaged by dermatitis, they raised public awareness about all the harsh dimensions of the disease, which makes the quality of life for those affected and their families comparable to that of cancer patients and those with severe diabetes.
Summary of bilateral results
During the working visit to the Norwegian partner, experiences were exchanged and cooperation strengthened in the future.