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Altered body as a source of interactional problems in the family of individuals with neurofibromatosis type 1 - A polish study.


ABSTRACT:

Background

Neurofibromatosis type 1 (NF1) is an autosomal dominant genetic disorder, whose clinical picture is dominated by visible body changes as well as numerous somatic and behavioural abnormalities.

Aim

The aim of the study was to explore the ways in which the individual experiences NF1 in everyday life, with particular emphasis on the impact of the altered body on family interactions, in addition to the personal and social identity of individuals with NF1.

Methods

A qualitative study was performed using individual in-depth interviews with 93 individuals with NF1 (median age: 36.69; range: 18 to 64; 26% males).

Results

Body changes caused by NF1 determine the specificity of social interactions in the families of the sick. The strength and direction of the

SUBMITTER: Kowal K 

PROVIDER: S-EPMC11559997 | biostudies-literature | 2024

REPOSITORIES: biostudies-literature