Turners Syndrome

Mar 5, 2006 at 05:05 o\clock

Turners Syndrome

Turners Syndrome: a genetic defect in women in which there is only one X chromosome instead of the usual two.

Affected women are infertile. They have female external genitalia but no ovariesand therefore no menstrual periods (see ammenhorea).

Characteristically they are short in stature and have variable developmental defects which may include webbing of the neck.

(Oxford Consice Medical Dictonary. 6th Edition. 2003. Oxford Univeristy Press. UK).

 

This is just one of a myriad of definitions I have read and descriptions I have been given of my condition. Probably the most upsetting was one describing a person with Turners Syndrome as asexual.

For an 11 year old this was a lot to digest at the time. Having just finished a range of diagnostic tests and been informed of the outcome, Doctors were carefull to stress the importance of tha family no laying blame on each other.

They offered counselling at the time, but from my recollection we had one session together. Perhaps this lack of enthusiasm was due to stigma associated with needing therapy or perhaps my parents separation and subsequent divorce at around the same time contributed.

The next four to five years involved being treated with Human Growth Hormone. I injected myself each evening and every three months went to see an endocrinologist to be weighed, measured have my thyroid function tested and basically check my progress. I was also on hormones for breast development and eventually progesterone to induce menstruation.

I have been fairly lucky in that I do not posses a large number of the complications or features that are associated with Turners. My heart and kidney function are fine. Subsequent bone scans indicate normal bone density. I do not have swollen feet or hands.

I do have a low hairline but no obvious (perhaps slight) webbing of the neck. I of course have no ovaries and my final height is around 5 feet.

I guess the point of me writing this piece is that coping with Turners is something you need to do everyday of your life. No medical dictionary can prepare you for the challenges presented by the comination of everyday life and Turners.

In highschool when most kids were going through puberty or had already, I was injecting myself and taking hormone tablets to develop. Other girls my age were thinking of boys and going to parties, hanging out on weekends. I felt ashamed, embarrassed and shyed away from my peers.

The already trying experiences of puberty and dealing with the awkwardness of your body changing was exacerbated by requiring hormones and a desire within myself to look like everyone else.

There was also the need for acceptance from your peers and family; wondering how, when and if you should tell people and the possible rejection that could result.

I can still remember giving myself the injections. Personally for me, the needle itself wasn't the problem. It was having to kart the stuff around when I stayed over at my dads or a friends or went to school camps. At the time I guess the disruption was a reminder something was wrong and I didn't like it.

In my highschool days the infertility was not a huge issue. I didn't really feel confronted by that until  went to university and started getting interested in boys. I had a couple of dates and in my first two years of university there was one boy I liked in particular. Nothing happened and the rejection was quite painful.

Now at 26 something I am going to have to deal with when and if I meet someone special is the issue of infertility. But let me get one thing straight. I do not want people to feel sorry for me because of this. I have known for 15 years now. I am single and can honestly say I am ok with it. Indeed seeing famous couples adopt makes me feel positive.

Yes, the infertility and dealing with peoples varied reactions to my short stature are something I deal with everyday. It doesn't mean my life is over. I may not even want kids, but it is something I have no choice over and I accept that . That being said I am not prepared for when someone else is in the picture and dealing with their response  to it.

One thing I have also realised over time is that women are competitive when it comes to the opposite sex and this can make dealing with your own insecurities even more difficult when you add a love rival or simply a petty, bitchy female to the mix.

Just a perspective, and you dont' have to agree, but I have found women are drawn to other women that are going to help them meet or attract men.

Being rejected on this level in the past has been quite hurtful.Something I wish I'd known earlier is that you are worthy of respect and friendship and just as deserving of these as your peers.

Perhaps the most confronting time for me being faced with these issues of sexuality and my identity as a woman was being quite beligerantly harrassed whilst teaching English in Japan. I was faced with two men who saw fit to make a joke of the very essence of me a a person for a 10,000 yen or 150 AUS bet.

Don't get me wrong, I have so far had an eventful life, filled with highs and lows. Perhaps more than my fair share, but nevertheless I believe these experiences have added to who I am as a person. It is important to still realise your dreams and goals.

There are plenty of books about the symptoms of Turners, but not a great deal of literature about coping emotionally . Life is to short to be bitter. I have felt cheated, angry, depressed and self conscious. It may get hard, but it is important to make the most out of life and the hand you are dealt rather than let it defeat you.