Participación con experiencias de personas adultas en libro sobre DSD

Understanding differences and disorders of sex development (DSD)

Editores: Olaf Hiort (Lubeck, Alemania) y Faisal Ahmed (Glasgow, Reino Unido)

A fresh look at several aspects of DSD
Ten years ago a group of experts assembled in Chicago to develop a consensus on the management of conditions previously described as intersex. The consequences of this consensus have been far reaching, including a change in nomenclature, the development of greater collaboration across geographical boundaries, and a move towards greater involvement of patients and parents. Moreover, an international registry was established, as well as research and clinical networks.
This book brings together a thorough overview on all these topics. Furthermore, the major technological advances in diagnostic genetic and biochemical capabilities over the past 10 years are outlined in detail.
Offering a comprehensive update on various aspects of disorders of sex development (DSD), this book will be essential reading to all clinicians who are involved in delivering health care to patients with a DSD, as well as scientists involved in biomedical research related to DSD.

Participación en capítulo capítulo 3.4 Past Experiences of Adults with Disorders of Sex Development
Autores: GrApSIA · Dra Laura Audí
(DSD). Endocr Dev. Basel, Karger 2014, vol 27, pp 138-148 (DOI:10.1159/000363639)

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.