My life Isn’t Defined by Turner Syndrome but Refined by It – by Robin Bowers

This Turner Syndrome Awareness Month, I want to share a little of my story to hopefully encourage fellow butterflies and their loved ones. I was diagnosed with Turner syndrome at 14, after years of struggling with feeling different from my peers. I wasn’t growing or changing the way other girls my age were, and I knew something wasn’t right. I began searching online for answers to why this was happening. I came across Turner Syndrome and immediately knew I needed to ask my doctor for a karyotype.

It was a long road to begin interventions that should’ve begun earlier in my life. I cannot express my gratitude enough for the Turner Syndrome Society of the United States (TSSUS) community. I am living proof of how important the mission of the TSSUS is. A whole community of butterflies was waiting for me that I didn’t even yet know about!

While it was validating to get answers, it also marked the beginning of a new reality as I knew it. There would be hurdles to overcome and challenges to face. My family supported me through it all. Every three months, my mom would have to drive me 2 ½  hours away to see my pediatric endocrinologist. Standing at 4’4 tall, starting growth hormones was the first step in my journey and it wasn’t an easy one. I was sensitive to them, so it was a slow process, but I reached 5 feet tall finally! Woohoo!

Turner Syndrome affected more than just my health though. Learning and friendships were things that took time for me. Driving was no exception. However, by 21, I had managed to work part time, save enough for my first car, and get my license! Even though I have an amazing family, it meant a lot for me to have independence where I could.

School was another hurdle, academically and socially. I set my mind to do my best at school. Unfortunately, a teacher once told me I wouldn’t make it to college. With some support, perseverance, and determination, I DID make it! In 2016, I graduated with my Elementary Education degree from Florida Gulf Coast University. The exams I passed for certification had a 30% “pass on first attempt” rate but once again, I beat the odds! I now have the joy and blessing of being an early childhood teacher and love what I do every day. My faith, family and a close group of friends encourage me daily.

Looking to the future, I hope to have a family of my own through fostering or adoption. Right now, my focus is on becoming the healthiest and best version of myself—physically, emotionally, and mentally. I would say my life hasn’t been defined by Turner syndrome but refined by it. I wouldn’t be me without it! I look ahead with excitement and self-acceptance!

I had the honor and blessing of going to my first TSSUS National Turner Syndrome Conference in 2024 in Orlando, FL. Becoming connected with this incredible community of strong, resilient, and beautiful women has been nothing short of life changing. We each have our own unique story, yet we are all connected by a common thread. We persevere. We are stories of miracles. We are Turner Strong.