Resources for Turner Girls and Their Families...

Happy 2015! I know it's been a while since I posted, but I thought I would start the new year by telling you about a couple of resources and points of information for Turner's girls and their families.

If you have a Turner's girl in your life, sooner or later she will need to know just how Turner's will impact her. Speaking from personal experience, the sooner you give your little girl this information, the better. I can remember my mother sitting me down in the kitchen of our home and presenting me with the book "Good Things Come in Small Packages". I was between 6 and 8 years old, so the conversation between my mother and I ran something like this.


Mom: "You asked me before why you're so small, do you want me to tell you now?"

Me: "Sure".

Mom: " Well, to start you're missing part of a chromosome"

Me: *looking bewildered and concerned * "Will you help me find it?!"

Mom: *laughing* It's not something that can be found sweetie, here let's read this book together.

We read the book

Mom: " are you done looking at the pictures and everything?"

Me: "Yes"

Mom: "Do you have any questions?"

Me: "Nope"

Mom: "Do you understand what the book was talking about?"

Me: " Yes"

Mom: "You know you'll be short the rest of your life? And that you won't be able to have your own kids unless you adopt?"

Me: *looking very serious* "I know, but it's okay mommy, I have my dolls for now and when I get big I can just live next door to you after I get married!"


Now there are pros and cons to every approach with this kind of conversation. And, while I was too young to fully appreciate every implication of life with Turner's, I have always been glad that my parents told me about it at such a young age so that it was "normal". I knew what to expect in my future, and that early knowledge helped to equip me for most of the challenges I would face. Telling your special Turner's girl early is something I would definitely recommend.








Another resource is the Turner's Syndrome Society. They have local chapters that get together for support and conversation. I can remember going to one meeting where a 19 year old girl was bemoaning the fact that she would get pulled over by the police often because they didn't believe she was old enough to drive! I myself have had to use an extra seat cushion in certain cars. Anyway, the TSS also has national conferences that discuss various topics, provide you with the chance to meet other Turner's girls, and I think even offer some scholarships for college and technical education!


So, what are the best resources you have found in researching Turner's Syndrome? Or, if you are a Turner's girl, how did you parents explain Turner's to you?  As always, if you have any questions or topics of interest you wish me to address here on the blog, feel free to contact me or just leave a comment.