My Story

A story can bring hope, healing, and support to so many. We invite you to  share yours!

This is a place to share your personal journey of diagnosis, building positive support systems and becoming an active contributor in pursuit of awareness, advocacy and new science.  We believe every individual and their family deserves to be heard and for those that wish to share their personal story, this is your platform.  SHARE YOUR STORY HERE 

Here is Alicia’s story:

Alicia Frick Family Photo

Alicia, Dave and their precious children.

It all began with a broken finger. After looking at the x-rays, the doctor cryptically suggested that my mom take me to be tested for something called Turner’s Syndrome. I was eleven years old. I had never heard of Turner’s Syndrome. And apart from my short stature, I had yet to experience any other medical problems that would have indicated there was something wrong. But after several tests confirmed the diagnosis of Mosiac Turner’s Syndrome, my family and I decided that it would be important to find out all that we could about it. We found out that growth hormone injections were the standard procedure for young girls with Turners. I wasn’t too thrilled about the idea of daily shots, but I began the medication in the hopes of gaining some extra height. It was clear after a short period of time that my body wasn’t adapting to the injections very well.

I began getting severe migraines shortly after starting the medicine and they couldn’t be explained by anything else. When the headaches stopped right after I stopped taking the growth hormone my family and I decided to stop the treatment. I had to learn to accept and embrace my short stature through the awkward pre teen years as I faced teasing comments and nicknames like “shorty” and “short stuff.” I did have fun asking people to guess my age because they inevitably (and still) guess many years younger than my genuine age. My height was the first of many things that I had to learn to accept.

Through the following years, as I came to better understand my diagnosis, I have been blessed to have the support of my family, friends, church, and eventually, a loving husband. Many of the challenges from Turner’s Syndrome would not hit me until years after the diagnosis... Click HERE to read the whole story. 

Feel inspired? Here is more! Check out Josey’s story. She is a Turner Syndrome girl who has proven that there is truly no limit. She is beautiful, happy, and accomplished. She is capable of doing anything she sets her mind to! 

I am a Turner’s girl! Check out my story

These are just a few of many great stories we received from individuals that are determined to defeat the stigma and lack of knowledge there is about Turner Syndrome. They are women, parents, children, siblings and friends directly and indirectly affected with TS. By sharing, we hope you become inspired!


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