title: Past experiences of adults with disorders of sex development.
abstract: When a human being born with any disorder/difference of sex development (DSD) reaches adulthood, the experience lived may be quite varied, depending partly on the age at diagnosis, the underlying cause, physical and health involvement, family circle, health system care received, societal culture and psychological ability to face the process, etc. As affected persons may suffer not only from diverse types of physical differences, but also difficulties in adapting their lives to the most common social mores, international consensus has long advocated a pluridisciplinary care involving different medical specialities. Although healthcare systems have progressively improved, the physical and psychological experiences of these adults may often have been stressful or traumatic, partly due to the 'rarity or low frequency' of their condition, and also to the fact that the person's sexual life is involved. The creation of support groups by affected individuals and their activities have proved extremely rewarding by improving individual well-being and pushing healthcare systems towards higher standards. In this chapter, we present the work of a patient support group in Spain (objectives, activities and opinions) and reflect present views and past experiences of a number of its adult members.
authors.affiliation: Vall d'Hebron Research Institute (VHIR), Paediatric Endocrinology Research Group, Hospital Vall d'Hebron, Centre for Biomedical Research Network on Rare Diseases (CIBERER), Autonomous University of Barcelona, Barcelona, Spain.
authors.forename: Laura
authors.initials: L
authors.lastname: Audí
mesh_terms: D000328:Adult; D012734:Disorders of Sex Development / Q000523:psychology*; D006801:Humans; D012944:Social Support; D013315:Stress, Psychological / Q000523:psychology*