Living with Crouzon syndrome: how do young adults with Crouzon syndrome handle their life situation?

ABSTRACT

BACKGROUND: Recent research has been focused on those attributes that appear to buffer a person against the stresses and strains of living with a visible difference. AIM: To provide some insight on how young adults with Crouzon syndrome handle their life. DESIGN: Telephone interviews were carried out with eight Crouzon syndrome individuals (six males, two females, mean age 25.4 years) and data were analysed according to the qualitative method of grounded theory. RESULTS: The informants' main concern was to make the best of their situation, showing that even in adverse conditions, as in Crouzon syndrome, several individuals do find ways to live with their difference and to succeed in various aspects of life, using strategies they construct. Such strategies, as identified from the present investigation, were labelled committed to an engaging activity, avoiding exposed situations, actively launching oneself, struggling with normalizing facial appearance, and lowering the expectations of finding a love partner. CONCLUSIONS: The adaptation of successful coping strategies seemed to be crucial in the quest of attainment of higher self-esteem. The more the participants in the study used the coping strategies they had developed over time, the better they handled their life situation, which led to enhanced well-being.