Thursday, January 26, 2012

Turner Syndrome Awareness Month

First of all most of you will question what is Turner Syndrome or TS as we call it. Well it's a random genetic disorder that affects girls, 1 in about 2,500 live female births worldwide. They are generally missing 1 X chromosome and can have variations of mosaicism ( part of the 2nd X, inverted arms in the X, triple X etc).
About 1% of TS pregnancies survive and are born, making these girls an extraordinary miracle, bc not only does science tell us you need all your chromosomes to sustain life, they have 1% of survival rate and still make it and thrive. Unlike most syndromes this syndrome does not come with mental disability, but yes it can bring some learning disabilities and autism spectrum disorders. These girls/women need to be checked for heart, kidney problems, have growth problems which most use Growth Hormone treatments IF diagnosed on time, ovarian failure and high blood pressure are also a factor.
Which brings us to raising awareness, some do not find out until they are teen or adults and some are diagnosed sadly after death upon further looking for a reason why.
Last year our local paper did a story on my daughter and her journey and ours with TS, this year we reached out to our Governor and I am happy to announce Governor Mary Fallin from Oklahoma agreed to sign the Proclamation for February as TS Awareness Month. We are very thankful as this step is just another brick on the road we are trying to build to help spread awareness not just Nationwide but Worldwide. The more awareness the more lives can be saved and be treated early to ensure a better quality of life for them.

I must add these girls are full of drive and determination, they are sweet,loving and very bright and they are able to live long, happy and fulfilled lives. Some end up being teachers, counselors, therapists, Dr's, nurses and more.

To find out more about Turner Syndrome/TS please visit TSSUS.ORG


  1. Congrats on getting it signed! Do you have a link to the story the paper did on your daughter?

  2. Thanks Sarah, I posted the newspaper article as a new entry o the blog


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