Living with Androgen resistance syndrome
A condition in which the body can't respond to certain male sex hormones, affecting sexual development before birth and during puberty.
Understanding Androgen resistance syndrome
People with this condition are genetically male, with one X and one Y chromosome in each cell. Their bodies can't respond to certain male sex hormones (androgens), so they may have some physical traits typically seen in women. It is present during pregnancy or at birth.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. The summary describes differences in sexual development.
- Differences in sexual development before birth and during puberty
- Some physical traits typically seen in women
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include genetic specialists, hormone specialists, maternal-fetal medicine specialists and urinary and male reproductive system specialists.
- 3Consider genetic testing
Changes in AR are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Resolve: The National Infertility Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Hormone specialists (endocrinologists); Maternal-fetal medicine specialists (pregnancy-related); Urinary and male reproductive system specialists (urologists)
- Expert care
- Expert lists: Resolve: The National Infertility Association
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with InterConnect and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
Changes in the AR gene cause this condition, and it is inherited in an X-linked recessive pattern.
Also known as: ais; ais - androgen insensitivity syndrome; androgen insensitivity; androgen insensitivity syndrome; androgen insensitivity syndrome due to coactivator deficiency; androgen insensitivity, complete
Patient organizations
- InterConnectAndrogen resistance syndrome · United States
- Resolve: The National Infertility AssociationInfertility · United States
You are more than your diagnosis
Perspectives from people navigating life with Androgen resistance syndrome.
Explore research for Androgen resistance syndrome
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- Recruiting studies from ClinicalTrials.gov
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