Persons with incomplete AIS may have both male and female physical characteristics. However, the person does not menstruate and become fertile. At puberty, female sex characteristics - such as breasts - develop. How many male traits people have differ in incomplete AIS. A person with complete AIS appears to be female but has no uterus, and has very little armpit and pubic hair. The complete form of the syndrome occurs in as many as 1 in 20,000 live births. These defects make the body unable to respond to the hormones that produce a male appearance.Ĭomplete androgen insensitivity prevents the penis and other male body parts from developing. It is caused by genetic defects on the X chromosome. As a result, the person has some or all of the physical traits of a woman, but the genetic makeup of a man. Undescended testes were also removed from her abdomen to prevent them from developing cancer although some doctors now think affected children can be monitored instead.įor a long time Pagonis struggled with depression and angst until meeting young intersex adults who've embraced their differences.Īndrogen insensitivity syndrome (AIS) is when a person who is genetically male (who has one X and one Y chromosome) is resistant to male hormones (called androgens). However, Pagonis says she learned as a teenager that this was 'almost impossible'. Pagonis was born with an enlarged clitoris, no uterus and a partial vagina that surgeons later extended so that as an adult she might have normal sexual intercourse. Two decades ago, there was little information about AIS and Pagonis' parents were'n't sure how to talk openly about the condition. God! That's the thing the teacher was talking about. Flashback: The 29-year-old (seen above circa 1990) has Androgen Insensitivity Syndrome (AIS), a very rare disorder which prevents a womb from growing and causes testes to grow in the abdomen
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