Monday, June 15, 2009

Turners with Big Boobs

I have huge breasts. I would happily trade them in for smaller, more perky ones. Not that I'm complaining, they suit me just fine. My point is just to show that there is so much wrong information getting to parents and girls with Turner's.

I am frustrated at how much wrong information is on the web, and how many people write reports from a place of authority and scientific study that are untrue and potentially harmful. One post riled me up today, here's part of it.

"A person with this syndrome is a female in appearance, but she doesn't develop like one. She never really sexually develops, she is infertile, she develops physical abnormalities like hair loss and webbing of the neck, tumors and heart disease are common, and she often struggles with learning disabilities. This is a really sad life."

He goes on to question how we can have a sense of our identity if we do not have intelligence or clear sexual characteristics. As if to say that we can't even tell if we are women/girls or not.
Even if you never hit puberty and develop normally, I'm pretty sure most people know without a doubt what sex they are.

I'm glad there were lots of women to respond to this post with their own experiences showing his errors, but one woman having recently given birth to a girl with TS accepted it and wondered how much this disorder would affect her child as she grew up. She probably expects worse than reality because of this post. Girls with TS do not have higher chances of mental retardation and learning disabilities. I not sure I buy the more commonly accepted notion that we struggle more with math either, but I will have to research where that one comes from.

I called this blog Turner's with Big Boobs, because I'm running across all sorts of things that say ALL girls with TS do not develop, period, end of story. And I am a living testimony that this is not the case.
My doctor discussed estrogen treatment with me, and said we could start it after I finished with my growth hormone shots. Since it would counteract the growth, I had to wait until somewhere around 17 years of age to begin the estrogen treatment.
I was basically indifferent, I wasn't traumatized by being flat chested, but figured boobs would be nice and there were probably other benefits to having normal estrogen levels in my body.
But by the time I was fully grown, I hit puberty on my own and never took a single dose of estrogen. At age 17 my period came - to me and my family, and my doctor's surprise.
My breasts developed, and everything else you would expect from a girl, just a little later.

Granted, I am a unique case and probably this doesn't happen to the majority of girls with TS.
I still want people to know that these cases exist.
There are girls with a mosaic form of TS. This means that not all of their cells are missing the sex chromosome. This may explain why the severity of symptoms vary so much from person to person.
I wear a 32 D (and now that I'm pregnant, I'd say it's more like a DD) bra. I have fully functioning sexual organs. I've had regular periods since I was 17. I have successfully gotten pregnant without in vitro fertilization.

Just want the world to know Turner's lives are not sad, they are not all as this man described. And I don't want any mothers finding out their child has Turner's to freak out, thinking they won't be successful or bright, or be physically deformed. I don't want them to think their child's life will be forever sad and full of strife.

The worst thing we can do to girls diagnosed with TS is label them and lower our expectations for their life, or make them feel inferior. There is nothing different in our capabilities, our brain power, our sexual identity as women, or our ability to have meaningful relationships, etc.

Sunday, June 7, 2009

coming out of the woodwork to share my story

Before I get into my whole story and share my experiences growing up with turner's syndrome, I want to share the amazing news that I am now 4 months pregnant.
No IVF at work here, my body was able to do this on its own.

I'm not sure whether this gives hope to other woman, or makes them resentful of me - I really hope the former. I was hesitant to share my story out of fear that I shouldn't even place myself with other women who have Turner's because I have not had as hard a time as many, and maybe people won't appreciate hearing from someone who has had for the most part a normal life.

But friends of mine just inspired me to start this when I shared some of my story with them. I've never hidden my disorder, I've always been very open about it. I was never ashamed, the only noticeable physical symptom was my shortness. But that's the point I want to convey, that lots of women with Turner's live full lives and we shouldn't be ashamed.
I hope you will join in the conversation and share your perspective.

Since I've never met another woman with Turner's and only recently started reading other blogs, I was surprised at the devastation Turner's has caused some women, and how much misguided and incorrect information there is out there.
One news video I saw today made a blanket statement that "All women with Turner's" have to take estrogen. It's never an ALL thing. Women are affected in so many different ways.

So here begins the blog. I plan to start from the beginning when through some caring and good sense from my grandmother, I finally got diagnosed at 11 years old. I'll describe (in not too much detail, I don't want to bore anyone) some process, taking growth hormone shots, interactions with my doctor, and of course mainly the emotions this has stirred up over the years for myself, family, and friends.

I hope this brings comfort to people, offers food for thought, and encourages you to share or comment on anything I put up here. I have no shyness on this matter, and welcome all questions, comments, and stories.

Thanks for reading!