Warne Garry L, Raza Jamal
Department of Endocrinology and Diabetes, Royal Children's Hospital, Melbourne, Australia.
Rev Endocr Metab Disord. 2008 Sep;9(3):227-36. doi: 10.1007/s11154-008-9084-2. Epub 2008 Jul 17.
The way disorders of sex development (DSD) are viewed and managed in different cultures varies widely. They are complex conditions and even well-educated lay people find them difficult to understand, but when families are very poor and lacking in basic education, and the health system is starved of resources, traditional beliefs, folk remedies and prejudice combine to make the lives of children and adults with DSD extremely difficult and sad. Rumour and discrimination isolate them from their communities and they become devalued. People with DSDs desire the same things in life as everyone else-to find someone who will love them, to be valued as human beings, to feel at home in their own bodies, to be able to have satisfactory sexual relations should these be desired, to be able to trust their medical advisers and to be integrated into the general community. Long term outcome studies have been published from many countries, but these studies have not necessarily been critical of the values that underpinned the type of treatment given to the patients. There is a need for standardized instruments that would allow a true comparison of the quality of outcomes from the patients' perspective. Much could be done to improve equity between rich and poor countries for the benefit of people with DSDs. A focus on developing cheap, robust diagnostic tests, making essential medicines available for all, training surgeons to do better operations, educating health professionals, families and the general community in order to break down prejudice against people with DSDs, and training mental health workers in this specialized field, would do much to alleviate the burden of the condition.
性发育障碍(DSD)在不同文化中的看待方式和管理方式差异很大。它们是复杂的病症,即使是受过良好教育的普通人也觉得难以理解,但当家庭非常贫困且缺乏基础教育,同时卫生系统资源匮乏时,传统观念、民间疗法和偏见交织在一起,使得患有DSD的儿童和成年人的生活极其艰难和悲惨。谣言和歧视使他们与社区隔离,他们的价值被贬低。患有DSD的人与其他人一样渴望生活中的同样事物——找到爱他们的人、被当作人来珍视、对自己的身体感到自在、如果有意愿能够拥有满意的性关系、能够信任他们的医疗顾问并融入普通社区。许多国家都发表了长期结果研究,但这些研究不一定对给予患者的治疗类型所依据的价值观进行了批判。需要有标准化的工具,以便从患者的角度对结果质量进行真正的比较。为了DSD患者的利益,可以做很多事情来改善富国和穷国之间的公平性。专注于开发廉价、可靠的诊断测试,让所有人都能获得基本药物,培训外科医生进行更好的手术,教育卫生专业人员、家庭和普通社区以消除对DSD患者的偏见,以及在这个专业领域培训心理健康工作者,将大大减轻这种病症的负担。