Adolescents with Disorders of Sex Development (DSD) - Lost in Transition?

Children with chronic illnesses face multiple challenges as they mature into adulthood, which relate to independence, access to care, and changes in care providers. The scope and magnitude of these problems is amplified in children with disorders of sex development (DSD). In these children, the normal progression of pubertal events can be early, late, contrasexual, pharmacologically assisted, or some combination of these features. The diagnosis of DSD can occur in childhood, which gives the family some time to prepare for future events, but in other cases, the diagnosis is made during adolescence as the condition becomes apparent. This article discusses the difficulties these children and their families face during adolescence, provides an overview of the transitioning process, and uses a few conditions as examples to illustrate particular aspects.