Differences of Sexual Development (DSD)

The Difference of Sexual Development (DSD) team consists of clinical medical social work, psychology, urology, endocrinology, gynecology, and genetics. 

These teams work closely with families throughout the development of the child to provide support, education and answer questions.

Our Team

  • The DSD Team specializes in the care of individuals with various conditions, including genital ambiguity, Androgen Insensitivity Syndrome, Congenital Adrenal Hyperplasia, Gonadal Dysgenesis, Hypospadias, Vaginal Agenesis, and Testicular Regression.
  • These teams also assist families with diagnosis disclosure.
  • The team meets with families throughout the child’s development to provide support and education on long-term expectations, sexual function, fertility and self-image.
  • The THRIVE-DSD team provides long-term follow-up which may begin during the neonatal period, continue through childhood and adolescence, and through the transition to adult care.

Meet Our Team

Social Work

  • Provide initial assessments regarding psychological, social, and financial needs.
  • Offer psychosocial support to caregivers and the patient regarding diagnosis.
  • Offer psycho-education to develop skills around healthy emotional and sexual well-being.
  • Optimize psychosocial function and future sexual function.
  • Assist with issues related to body image, disclosure, and relationships.

Endocrinology

  • Evaluate and diagnose any underlying hormone abnormalities.
  • Explain and educate families about the normal and abnormal processes associated with the diagnosis, including possible effects on fertility.
  • Design and monitor a treatment plan that may include hormone replacement or substitution to promote growth and puberty.

Urology

  • Evaluate and explain the underlying anatomical condition.
  • Discuss the long term functional expectations with patients and families and help determine if surgical intervention is needed.
  • Discuss the type of surgery that might be performed, expected outcomes and recovery.
  • Offer long term follow-up to ensure adequate preparation and transition to adult life.

Psychology

  • Work with patients and families to help adjust to the stress of living with a chronic illness.
  • Assist with issues related to body image, disclosure, and relationships.
  • Can meet regularly with patients to work on significant mood, anxiety, or behavioral issues.

Gynecology

  • Aid in diagnosis and evaluation of underlying condition.
  • Help diagnose, manage and treat gynecologic conditions, both medically and surgically as needed.
  • Discuss short and long term reproductive and sexual health concerns.
  • Assist with menstrual suppression, contraception and hormonal replacement therapy.

Genetic and Genomic Medicine

  • Evaluate and diagnose possible underlying genetic causes of condition.
  • Consider other medical issues that may arise from a genetic cause.
  • Offer information about possible family link and transmission of genetic issue or concern.

Resources

Access national resources below.

View Differences of Sexual Development (DSD) and Complex Urological Conditions Resources
  • DSD Guidelines - Handbook for Parents provides information for parents and their children with DSDs.
  • Androgen Insensitivity Syndrome and other Disorders of Sex Development Support Group (AIS-DSD) - Provides information on Androgen Insensitivity Syndrome (AIS) and similar conditions.
  • CARES Foundation, Inc. - provides education and research for Congenital Adrenal Hyperplasia while providing the resources and the latest information available for managing life with CAH.
  • Hypospadias and Epispadias Association - Gives parents the information and education needed to make informed decisions about their child's care.
  • DSD Diagnosis Disclosure - Provides tips on how to talk to your child about their DSD diagnosis and explains why this disclosure is so important.
  • MRKH Organization - Offers support for women with Vaginal Agenesis through linkage with support and general information.
  • Association for the Bladder Exstrophy Community (ABC) - An international support network consisting of individuals with bladder exstrophy, parent-exstrophy support groups, and health care providers who work with patients and families living with bladder exstrophy. 
  • The United Ostomy Associations of America, Inc. (UOAA) - A national network for bowel and urinary diversion support groups in the United States. Its goal is to provide a nonprofit association that will serve to unify and strengthen its member support groups, which are organized for the benefit of people who have, or will have intestinal or urinary diversions and their caregivers. The UOAA is a national organization to provide support, information and advocacy to ostomates and their caregivers.