Overview: Differences in Sex Development (DSD) or Conditions Affecting Reproductive Development (CARD) conditions range from genetic disorders (e.g., chromosomes) that have complex and varied presentations to those that have specific presentations and medical prognoses due to hormones (e.g., sex characteristics, genitalia). Approximately 1-2 in 100 people are born with DSD/CARDs in the United States. Some of these diagnoses are identified at birth and others may only be detected during puberty when secondary sexual development typically occurs.

Notably, due to the diverse types of DSD/CARDs, people with DSD/CARDs and their families are vast and approach their medical and behavioral health care in different ways. Thus, we at SOGIA support and affirm people with DSD/CARD conditions and will assist their journey over the many developmental milestones and realizations that may come along with a DSD/CARD diagnosis.

We will work to aid parents with newborns through the various decisions and psychosocial aspects of caring for their child. Parents are supported through a nonjudgmental approach where the role of the provider is to listen and share options of care in an open dialogue. This includes consulting and advocating for families with their medical teams. As your child ages there may be additional decisions for medical care, disclosure (who, what, and when you share your child’s condition within your support network), when and what do you share with your child using age-appropriate language about their DSD/CARD, or your child may share with you a different gender from what they were assigned at birth. Behavioral health professionals with DSD/CARD expertise will provide support and resources to help parents and their children navigate the life journey.

Part of this journey may include the person with a DSD/CARD to identify with the intersex community as someone with an intersex condition or identify their gender as intersex. Those with intersex identities are also included in the 2SLGBTQIA+ community and there are some people with intersex identities who do not by choice include themselves. Either way, our care providers will support intersex people regardless of identification or condition. The term intersex is used to describe people who are born with sexual or reproductive anatomy that does not adhere to typical “male” or “female” bodies. These are natural variations of human bodies and are not necessarily a medical problem that needs to be addressed.

Partial List of DSD/CARD/Intersex Conditions: 46,XX; 46,XY; XX,sex reversal; XY,sex reversal, XX Testicular DSD; Androgen insensitivity syndrome; Aphallia; Aromatase deficiency; Campometic dysplasia; Clitoromegaly; Complete androgen insensitivity syndrome (CAI); Congenital adrenal  hyperplasia (CAH); Denys-Drash syndrome; Estrogen insensitivity syndrome (EIS); Gonadal Dysgenesis; Klinefelter syndrome (47,XXY and XXY syndrome); Lipoid congential adrenal hyperplasia; Mayer-Rokitansky-Küster-Hauser (MRKH); Mild androgen insensitivity syndrome (MAIS); Mixed gonadal dysgenesis; Ovotesticular disorder; Mullerian agenesis (Vaginal agenesis); Partial androgen insensitivity syndrome (PAIS); Persistent Mullerian duct syndrome; Swyer Syndrome (Pure gonadal dysgenesis or XY gonadal dysgenesis); Turner Syndrome.

Resources: (Courtesy of advocate Noi Liang):

Education & Understanding DSD/CARD/Intersex

• DSDTeens – Website made by and for young people with intersex variations or DSD to provide information on puberty, growing up and living with these variations.

• DSD Families – Has a variety of resources for caring for infants, children and adolescents with DSD/intersex variations.

Support Groups

• InterConnect – Major support group covering a wide array of intersex variations and DSD and serving individuals and families. Based in the US but with membership throughout the world. Formerly known as AIS-DSD Support Group

• Beautiful You MRKH Foundation – Support group for those with Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome

• CARES Foundation – Focuses on medical information and support around Congenital Adrenal Hyperplasia (CAH).

• Hypospadias and Epispadias Association – Offers support and education for people born with hypospadias and epispadias and their families.

Organizations that Advocate for Intersex People

• interACT Advocates for Intersex Youth – Works to raise intersex visibility and promote policy and law that protects intersex youth

• Intersex Society of North America (ISNA) – Prolific organization in intersex advocacy and activism that has closed its doors but maintains its website as a historical archive of past work. interACT now does much of the work ISNA once performed.

• Accord Alliance – Advocates for improved healthcare and better collaboration for all stakeholders involved in DSD/intersex

• Intersex Justice Project – Organization focused primarily on ending surgery on intersex genital surgeries