About 1 million Dutch people have a rare condition. As a result, it is often complicated to make the correct diagnosis and find the right treatment. In this series, experts by experience talk about the impact of this. Today Ellen van der Velden (51) about the androgen insensitivity syndrome: “Now I know: I can be there.”
In school we learn that an XX chromosome pair belongs to women and an XY chromosome pair belongs to men. However, the reality is different, says Ellen, who has partial androgen insensitivity syndrome (AOS). With AOS, the body is (partially) insensitive to androgens, the male sex hormones. Because the uterus and ovaries are missing, Ellen was unable to have children of her own. And therefore no menstruation, which she sees as ‘an advantage’.
What is AOS?
There is Disorders/Differences of Sex Development (DSD), when the chromosomal, gonadal or anatomical sex development proceeds differently. There are dozens of forms of DSD, including AOS. In complete AOS, the body is not sensitive to androgens at all. If the body is partially insensitive, it is called partial AOS. Treatment may consist of surgery and/or the administration of sex hormones. About 1 to 5 in 100,000 people with an X and a Y chromosome have complete AOS. It is estimated that partial AOS is about as common.
“Some see AOS as a condition, others more as a biological variation,” says Ellen. “Essential to the experience is that you have a body that does not conform to the standard shape of a man or woman, while you clearly feel that way.”
Like most with AOS, Ellen has always felt like a woman. Others feel male, or non-binary. “Your genes and sex characteristics don’t determine how you feel. Apparently it’s on another level. But you don’t read that in the biology textbooks.”
confidentiality
In some cases, it is not clear until puberty that there is a gender variation. In others, including Ellen, it is diagnosed early. “When I was born, it was briefly doubted whether I would be a boy or girl. My mother thought it was ridiculous, she saw right away that I was a girl.”
At birth it was briefly doubted whether I would be a boy or a girl
Ellen’s parents were as open as possible with her about the diagnosis. “As a result, I had the feeling that I was different from a very young age, that is very deep.” She can imagine that you grow up more ‘average’ if you don’t find out until around 16. “But I can also imagine that the shock is greater then.”
What particularly bothered Ellen was the secrecy surrounding the diagnosis. The motto of doctors at the time was: don’t talk about it. ,,That’s exactly why I felt left out, and not good enough. I’ve been lonely there too.”
When she was only nine months old, immature sexual tissue was removed. The operation was poorly supervised, resulting in a lot of pain and a deep traumatic feeling. Ellen is critical of the still inadequate policy.
If society finds it difficult that not everyone fits into a light blue or light pink box, society should change
,, Also outwardly normalizing operations, such as a clitoral reduction or clitorectomy, at a young age often turn out badly. You also don’t know if someone will feel like a woman later on. There are no hard and fast agreements. You can think of a ban, a good register or a double decision model, such as euthanasia.”
Here I am!
At the age of fourteen, Ellen came into contact with peers through an association. It was a life changing experience. “It was only then that it became clear to me: everyone can experience this. There is nothing wrong with me.” She grants everyone such a place to turn to, which is why, in addition to her work, she is now chairperson of DSD Nederland herself.
While DSD Nederland mainly revolves around contact between peers, interest group NNID focuses on social change. “I sailed with them on the Pride boat in Utrecht. That too was a life-changing experience. With that I really exclaimed: world, here I am!”
It was a quest for Ellen: first internally, then in conversation with others and then focused on the world. “Gender variation is not something to be ashamed of. If society finds it difficult that not everyone fits into a light blue or light pink box, society should change. We are there, I am there, and I can be there.”
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