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Monday, June 08, 2009

Another Amazing Comment on Turners Syndrome

Sometimes A Comment Can Make You Stop and Think « Ramblings of a Misguided Blonde

The above link leads to an amazing discussion on Turners Syndrome and sex. Quite frankly, I had forgotten just how amazing that conversation was. Today I received another eye-opening comment on our conversation.

The comment is as follows:

I'm actually surprised to read this. I feel like a Turner's Syndrome woman coming out the woodwork, having never spent much time thinking about or feeling affected by it since I stopped taking growth hormone until 10 years later when I married and decided to let myself hope I could have a baby. And was unsuccessful for 3 years, and was just getting ready to start working towards adoption.

But just today a friend of mine said she was sure she'd read that Turner's Syndrome have a high case of mental retardation. I had never heard that before from my doctors or from anyone. And TS being an "intersex" condition is also a new one for me. Both sound completely preposterous.

The same friends who thought there was a high rate of retardation have inspired me to start a blog talking about my own experiences. I recently got pregnant without IVF and I am calling this my miracle baby. They encouraged me to share my story, which also baffled doctors growing up (I was labeled non-mosaic, yet I started having all the usual sexual development at 17.)

So, I'm inspired and just set up a blog at turnersbaby.blogspot.com

While I hesitated a long time to share and talk to other women with TS because I always felt like I didn't belong (having less symptoms than most women - I think), I think it's time to share my case and learn from other woman as well, since I've actually never met or spoken to another woman with TS in my life.

A couple of observations: First and foremost, this is exactly why I write about and discuss Turners Syndrome. For so many years I was incredibly ashamed to have it. I felt like a freak, as though no one, no matter how understanding (including my own Mom), could understand what I was going through growing up. Then my parents made the best decision possible. They provided me with the opportunity to go to a camp out in Colorado for girls with Turners Syndrome. For the first time in my life, I felt as though I could honestly discuss some of the issues I was facing. It was simply amazing to finally realize that I was not the only one. Nothing could have been better at ages 14 and 15.

While other girls where thinking about dating, kissing, sex, etc., I was wondering if I would ever be able to have children, and trying to figure out where I fit into the scheme of things. It was very lonely. I had always wanted to eventually be a Mom (I still do), and I had to come to term with my physical limitations.

Second, this comment gives me a lot of hope. I am not such an optimist as to think that I will one day too have my miracle baby, but it is a possibility. This comment just adds to a growing feeling I have that I need to know more about my actual diagnosis and Turners Syndrome in general. For quite some time now I've had this growing suspicion that Turners Syndrome has been used as a blanket term for several related genetic disorders affecting the X chromosome. For example, there are several types of cancer. There indeed may be several different types of Turners Syndrome as yet to be identified. They don't even know if there is a chance as to whether or not it can be inherited or not. There are so many questions out there, and I wish I knew how to go about getting answers.

Much more on this later.

Lindsey

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10 Comments:

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At 8:12 PM, Anonymous Anonymous said...

Lindsey I am so happy for you! I don't know if you remember me but I'm Amanda Bessey from Camp. I would love to e-mail or facebook. My e-mail is abessey9349@mail.kvcc.edu. Again Congrats on everything :) Amanda

 

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