I don’t talk much about my Turner’s Syndrome and sometimes I rarely think about it. Usually it is an after thought when thinking about how much I want children.
I think I don’t talk about it because it is a lot to explain and not that many people truly comprehend what I am talking about. I tend to get a bit scientific about it though and I tend to loose people sometimes. I start off by asking if they understand chormosomes and how there are 23 pairs or 46 chromosomes. I then tell them that the last two set of chromosomes on a karyotype (a photo of our chromosome taken with a microscope) are the chromosomes that determine our sex. Males are XY and Females are XX. I then tell them how females with Turner’s Syndrome either have a whole or part of one of the sex chromosomes missing. Then comes the part about how it only effects females and how it only effects 1 in approximately 2,500 females. I then tell them about how it effects your pituitary (which gives you your growth hormone), it can mess with your thyroid (which regulates weight), but what hits worst of all is the fact that it effects our ovaries. Our ovaries remain underdeveloped our whole lives and if it weren’t for hormone replacement therapy females with TS would not go through puberty. Because of that our ovaries do not produce eggs usually (it is extremely rare to find an ovulating TS female) so we are not able to reproduce. Our uterus is normal so we can carry a child via in vitro fertilization with the use of an egg donor.
It is a lot to explain to people but it all has to be said. It does not effect our intelligence or abilities, it does not make us any different, but I still have this fear of judgement. I don’t want to be viewed “different” or “special” in any way. I feel other than my ability to bear a child I am fine. Sure, I am short, but compared to when I was in high school it is not as bad. I think that it has effected me in a way that I have this wall built to protect myself, along with other walls I have built. I think I used to hide it also because I felt like it was my own personal man repellent. That if they knew about this they would look at me different and not want to talk to me. It made me resent myself for a while and thus another wall. I can forget about these walls, and I need to remember them and knock them down. I need to be more open about what is going on with me and face the fact that I am “different” and a little bit “special” because of that difference. I should embrace it and not ignore it.
This link is to an article featured in the Grand Rapids Press and on mlive.com about the head of the Turner’s Syndrome Society of West Michigan. It is a lovely article, definitely worth the read.
If you read this I just want to say thank you!! It means a lot since this is a very sensitive subject for me and it can be a bit boring and difficult to comprehend so you taking the time to read this is touching!
February is Turner’s Syndrome Awareness Month
for more information please visit www.turnerssyndrome.org