Androgen insensitivity syndrome
Where do I find other people with androgen insensitivity syndrome?
One of the best ways to meet other people with androgen insensitivity syndrome (AIS) is by participating in support groups. AIS-DSD (differences of sex development) is one support group organization. There is also an annual conference available to individuals with AIS and their families. To learn more about support groups see the following links. There are also private online groups, in sites such as Facebook, that connect people living with AIS.
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Will I have to choose the gender of my child with androgen insensitivity syndrome (AIS)?
With complete androgen insensitivity syndrome (AIS), children are typically raised as girls since they have female external sex organs (genitalia) and commonly identify as girls. However, choosing the gender of your child with partial AIS is more challenging since their genitalia may have female and male characteristics. Many issues will need to be discussed and it's important to seek advice, counseling and support from different specialists who are knowledgeable about AIS and disorders of sex development (DSD). Most children with partial AIS report that they stay with the gender they are given; however, some may choose to change their gender later in life.
You can learn more information about AIS and gender assignment in DSD by reviewing The Clinical Guidelines for the Management of Disorders of Sex Development in Childhood at http://www.accordalliance.org/dsdguidelines/clinical.pdf and the Handbook for Parents http://www.accordalliance.org/dsdguidelines/parents.pdf.
Where can parents get more guidance on living with a child with androgen insensitivity syndrome?
A Handbook for Parents is published for parents of children with disorders of sex development (DSD), which includes AIS, and can be found at http://www.accordalliance.org/dsdguidelines/parents.pdf.
Some common questions asked by parents of children with androgen insensitivity syndrome are addressed at the website of the National Health Service in the UK at http://www.nhs.uk/conditions/androgen-insensitivity-syndrome/pages/treatment.aspx.
Support groups are also a great resource to connect with other families and medical professionals.