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!

3 comments:

  1. I was diagnosed with Turner's at the age of 3, and I think it's interesting that you've been so open about it growing up. I'm 19-years-old, and also reached puberty naturally. The syndrome hasn't defined my life thus far, and when I share it with people, they seem to assume that it has. I tell my close friends eventually, but I got tired of people jumping to conclusions. What influenced your decision to speak openly about it? Biology classes in high school were always difficult as far as the terminology goes. "Women with Turner's are sterile and do not develop secondary sex characteristics naturally." I would have liked to raise my hand and say flat out that it isn't always the case, and I'm wondering where you found the courage to speak up. Congratulations on the pregnancy, and thank you for sharing your story.

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  2. I hope all went well with your pregnancy and that you are a busy mom by now. I stumbled upon your blog tonight after getting news that my close friend's tiny baby has TS. She is one month old today and weighed only 1 lb at birth. It is encouraging to hear stories such as your own.

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  3. hi I'm 14 I'm 14 and I have Turner syndrome me and my family found out when I was 6-7 it's been Hard I had 2 surgery one was on my heart and another was for my brain..I hope your enjoying your little bundle of joy your baby

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