Hi, all I know it's been a while since my last blog. I have been extremely busy with the launch of my first book and preparing for interviews there's never been enough time in the day to get things are at least what I want to get done. I wanted to blog today because February is unofficially known by most support groups as Turner Syndrome Awareness Month. This has always had a special place for me over the years as so many of you share your stories of living with Turner Syndrome.
During this month those who are diagnosed and families of those diagnosed work to raise funds for research and awareness of this genetic disorder. You may have seen a support walk or other events in your area. The great news is there has been a large amount of research related to Turner Syndrome and other chromosomal disorders since I was diagnosed in 1985 but there is still so much that is unknown about Turner Syndrome and that is why it is so important to share your story.
Due to the fact that no two cases of Turner Syndrome are the same and the severity of the disorder in each case differs it is extremely hard at times to diagnose. The easiest way is a simple blood test called a karyotype. Often a girl with Turner Syndrome is not diagnosed until she is in her late teens are even adulthood. When this happens it is often too late for certain treatments to be effective.
That is why for me awareness and research are so important. Share your story I know at times it is difficult to share as you feel that your friends at school or your coworkers will treat you differently. Believe me, I have been there and it is not easy. 7 years ago I shared my story with 100 Iowa state legislators on the floor of the Iowa House of Representatives. As someone who wants to run for State House or Senate in the future, I was a little uneasy at the thought of people knowing of my disorder and that they might be put off by the idea of electing someone who has a birth defect. But they were extremely kind and welcoming and gave great advice on my future in politics. In a few minutes of sharing my story, I was at ease and the Iowa House voted to mark February Turner Syndrome awareness month in the state of Iowa. I pushed through my fear and so can you.
Know that you are braver than you know and never put limitations on yourself out of fear of what people will think. After all, we are butterflies and we should not be afraid to fly. So this month share your story with the world. This year’s awareness motto is Turners Strong so share how you are turner Strong.
So use the hashtag #Turnerstrongin22 on the social media apps you use and I cannot wait to hear your story