The social consequences of cystic fibrosis, a genetic disease with just over 1,500 sufferers in Poland, of whom only about 100 reach the age of 30 or more, are rarely studied from the perspective of the sociology of medicine. The nature of the disease requires a great deal of effort to adapt to life in a regime determined by symptoms on the one hand, and by treatment on the other, not only from the patient himself, but also from the carers (usually the parents or one of them), large expenses for necessary drugs, nutrients, the purchase of equipment and materials to guarantee proper rehabilitation and respiratory hygiene. At the same time, poor knowledge of the disease in society brings with it a lack of understanding of sufferers, misinterpretation of symptoms (mainly cough), often discrimination and social exclusion, leading to social isolation and a sense of otherness, which can cause low self-esteem and poor self-worth in sufferers themselves. The study presented here falls within a strand focusing on 'living with the disease', on determining the quality of life of people with cystic fibrosis at different points in their lives. The study, using a self-administered questionnaire, was carried out in a group of 201 people associated with the "Matio" Foundation for Helping Families and Patients with Cystic Fibrosis: 103 parents of sick children aged 5-13 years, 55 teenagers and 43 adults. The social perception of the patients according to the respondents was due to frequent coughing and body image associated with low weight, distinguishing the patient from others, and the fact that for about 50% of the respondents, the consequences of the disease limited the patients' participation in social life. The cough accompanying the disease was a reason for avoiding contact with cystic fibrosis patients in various social situations, demonstrating that disease symptoms misinterpreted are the basis for breaking social interaction, stigmatisation and exclusion. Feelings of stigma and social isolation were more common in adolescents and adults, and quality of life was rated lower on a number of dimensions. In each age group, feelings of stigma, isolation and social exclusion were accompanied by lower health-related quality of life scores.
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