We Might have Bumps Along the Way, but We don't have to be Alone

I sat at our light-brown, circle, kitchen table. My family was smiling and looking at me reassuringly. It was nighttime and the kitchen lights were dim. I was done with a long day at school as a newbie in seventh grade at middle school. They were going to tell me news that I was anticipating to hear from tests I had at the Children’s Hospital in Pittsburgh over the summer. Various thoughts of what the doctors found had been racing through my head for the few weeks I knew the results were coming in. My 13th birthday was the day prior, and my family waited to tell me the news until afterwards. I had such a fun time for my birthday, but this news was in the back of my mind. I was anxious to know what was found. “You have Turner syndrome,” my mom said.

My mind was blank. What is that? But a wave a relief flooded my entire body, as I was so afraid it would be something more serious. My family was not finished, so I geared my focus back towards the conversation, “It is a genetic disorder in which part of your X chromosome is missing. You will have to take growth hormones daily through shots,” my mother explained a little more after that. I still did not comprehend exactly what my diagnosis was, but I figured it was more manageable than other illnesses. I was so thankful for that. I did not know how to respond, and with a range of emotions hitting me at the same time, I started to cry. My family all hugged me and the warmth of support felt so good.

Not too long after, a nurse visited my home to demonstrate how to self-inject the hormones, and gave me a chart with different areas on my body that I could administer the shot. It was so detailed...I never saw such organization behind shots. I was intrigued. There was only one thing - I was terrified of shots. I never liked getting them growing up, and now I had to have one every day, with either my mom helping or giving it to myself. I knew this was going to help me and that it was very important for my growth, so I strove to be as brave as I could. The nurse was so nice, and was confident that I could get through it. That gave me courage. I believe the Turner Syndrome Society also sent me a package, with a backpack and pin, and that support was very uplifting and inspiring.

I was also told that math and science would be difficult for me, but that never stopped me from reaching my dreams. Twelve years later, I have now graduated with a Master's Degree in Global Health (MPH Global Health) from George Mason University. I was awarded with the Graduate Student Excellence in Service Award (from the College of Health and Human Services at Mason) for my service as a volunteer for three years at INOVA Fairfax Hospital and Paper Airplanes, a non-profit organization that provides language and professional development skills to conflict affected individuals through live, peer-to-peer online lessons.

I now look towards a PhD in Public Health. Although there were many bumps along the way, and still more to come, I never felt alone. I thankfully have not had as many complications so far as I know some others with Turner syndrome may have. It is my hope that by sharing my story I can help others affected by TS so that they too can realize they are so much more than a diagnosis. If you would like to reach out to me for questions, support, or advice, I'd be happy to do as best I can to help!

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The Turner Syndrome Society's mission is to

advance knowledge, facilitate research, and support all those touched by Turner syndrome.

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