JOYCE

My name is Joyce, and I was born in 1965. I first learned about my AIS status after I was genetically tested at about the age of 12, as there is a history of AIS in my family. However, at that time, the term was testicular feminization syndrome. I had my surgery (orchiectomy) when I was 12 years old. At no point did my parents or physician tell me why I was having the surgery, and it was at the age of 37 that I learned the full truth about AIS after reading through some medical records I had in storage. Having never gone through a normal puberty as my friends, I felt isolated, confused and ashamed. I wish my parents had learned more about AIS, and sat down with me and my physician to explain the details of AIS. By far, the worst part of AIS for me was growing up feeling different, and not understanding why I wasn’t able to have children. The only explanation I received was you have a family condition, you cannot have children, and here’s a bottle of premarin that you will have to get refilled for the rest of your life. The best part of my AIS journey is being able to talk to my sister about AIS, and sharing common experiences. It was amazing to talk with her after I learned the truth, and finally have a family member that understands and speak so openly about the “family secret.”

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Testicular feminization syndrome: Is a type of male pseudo - hermaphroditism characterized by female external genitalia (may be ambiguous if the syndrome is incomplete), incompletely developed vagina often with rudimentary uterus and fallopian tubes, female habitus at puberty with normal size breasts but with scanty or absent axillary and pubic hair and amenorrhea, and testes present within the abdomen or in the inguinal canals or labia majora; epididymis and vas deferens are usually present; androgens and estrogens are formed, but target tissues are largely unresponsive to androgens; individuals have a normal male karyotype; X-linked recessive inheritance, caused by mutation in the androgen receptor gene (AR) on chromosome Xq.complete androgen insensitivity syndrome.

Source: Stedman's Medical Spellchecker, © 2006 Lippincott Williams & Wilkins. All rights reserved.