Androgen insensitivity syndrome

It is recommended that children with androgen insensitivity syndrome (AIS) are followed by a pediatric endocrinologist. Other specialists that may be involved in the care of individuals with AIS include urologists, medical geneticists and genetic counselors, psychologists, and psychiatrists. These specialists may be available at your local medical center or regional pediatric hospital. It is also recommended that the parents of children with AIS seek counseling if they struggle with deciding with which gender to identify their child. Psychological support for issues that arise for those with AIS is one of the most important parts of their care.

More information about the treatment of AIS is available through Accord Alliance, which is an organization that promotes a comprehensive approach to the care and wellbeing of patients and families with disorders of sex development (DSD), which includes AIS. Visit their website at http://www.accordalliance.org/.

Ideally, individuals with androgen insensitivity syndrome (AIS) should see specialists who are knowledgeable in caring for individuals with AIS. A complete evaluation is needed to determine the needs of each patient with AIS. A copy of the Clinical Guidelines for the Management of Disorders of Sex Development in Childhood is available at http://www.accordalliance.org/dsdguidelines/clinical.pdf. Disorders of sex development (DSD) include AIS. This management guideline can be shared with your doctors.