Look deeper – I am more than my skin

Atopic dermatitis is a chronic, inflammatory, non-communicable disease of the immune system. The prevalence of the disease has been rising sharply in recent years, especially in the Western world. Adult patients account for 5 to 10 percent of cases, while children account for up to 30 percent of cases. The disease with its characteristic symptoms, among which rashes, inflammatory foci and severe and persistent itching stand out, seriously affects the quality of life not only of the patient but of the whole family. In addition to the symptoms, the patients and their relatives also face the stigma of ‘contagiousness’, marginalization, discrimination, unemployment, social exclusion, violence and other psychosocial challenges. Due to the general misunderstanding of the severity of the disease, the patients do not receive the necessary psychosocial support and coordinated medical treatment afforded to patients with psoriasis, a comparable medical condition. The reason for this is that decision-makers do not recognize the effect the disease has on the quality and safety of patients' lives.

The project aims to contribute to the empowerment and social inclusion of the atopic dermatitis patients. In Slovenia, we will conduct a research using participatory methods to address the patients' needs and provide statistically relevant and comprehensive information not only on the prevalence of the disease, but especially on the quality of life of the patients. In Slovenia, this will be the first research of this kind.

The patients and the parents of the children and adolescents suffering from the disease will work in focus groups with an innovative approach and in close cooperation with experts. They will develop a questionnaire for the patients in order to better understand the current situation. Using the method of online crowd-sourcing, the patients will be able to propose measures regarding health and psychosocial support, which we will present to decision-makers.

We will train and empower ten ambassadors who will encourage and empower other patients and parents of sick children and adolescents to make responsible decisions about their health, cope with the disease and its consequences constructively and take active action.

The target groups are the patients with atopic dermatitis, the parents of the children and adolescents with this disease, experts and the general public. The activities will be supported by a media campaign that will draw public attention to the severity of the disease and the plight of patients, thus contributing to the reduction of stigma, discrimination and marginalization of the patients with atopic dermatitis.