By looking at me, you can’t tell. You’d assume I’m just your everyday, average short 26-year-old. (I am, but for the purposes of this article, I’m choosing to differentiate myself.) I may come off as a little goofy and childlike, but that’s all part of my charm, or so my husband says. Unless you are a member of my family, or someone I may have actually told, you’d never guess that I was diagnosed as an infant with Turner syndrome.
If you haven’t heard of it, join the club. It’s not widely known (it affects about 1 in 2500 females, and is exclusively a female diagnosis; males with similar symptoms are diagnosed differently), and if the effects are subtle, there are no obvious indicators. It’s also not something that affects many aspects of my everyday life, if it does at all. Granted, there are some things that are different: I have to take a thyroid medication every day, which is caused by the syndrome. I’m short – about 4’11” – and if I hadn’t taken growth hormone shots when I was a child, I would have been shorter. I have a female form, but it’s along the lines of a girl just entering puberty, or perhaps slightly later. I don’t have a menstrual cycle (although I’m not complaining there!). I also cannot have children, at least not through “traditional” conception means.
Time out here, before I continue: please do not feel sorry for me about that last point. I’ve known about this since I was twelve or thirteen, so I’ve had time to accept it. Does that mean that I’m happy with the fact? NO. No, it doesn’t. It does mean, though, that I’m usually able to chalk it up to a crazy random happenstance, and don’t think about it much. Having someone give me that pitying, “Aww, you poor girl,” look or keep telling me that, “hey, you never know, God makes miracles,” just makes me want to punch something and scream at the top of my rather agnostic lungs that what they are saying DOES NOT HELP. It has taken me thirteen years and marrying my husband to realize that I’ not as okay with this as I thought, and their words are futile in helping me feel better. Say that it sucks. Change the subject. Say nothing at all. Just do NOT act like you feel sorry for me. It makes it ten times worse, and that’s why I rarely mention having this condition.
Until recently, I hadn’t bothered to really look into the effects of Turner syndrome. It was just something that I dealt with since as far as I could remember. I knew mostly that the main effects were on me, and since there weren’t many day-to-day reminders, I just kept on living, and even after I did a little bit of research not much, if anything, changed or will change (as it should be). Since I have the mosaic form of the condition anyway, it is even less obvious. I did find a great webpage, though, that helped enlighten me and my husband. Perhaps it will enlighten others as well.
Questions? Comments? I welcome them. I don’t profess to be an expert, though. :)