Getting Diagnosed with Turner Syndrome at 10 Years Old
Before my diagnosis at 10 years old I had a fairly typical childhood (and still did even after diagnosis). Aside from frequent ear infections, curled toenails, being a bit colicky as a baby, and growing a little more slowly compared to other children around me my age… there wasn’t a whole lot going on to indicate I had as impactful a diagnosis as Turner syndrome.
Once I was officially diagnosed around 2006, that began a big change: tons more doctors’ visits and big decisions my parents and I had to make, at just 10 years old, that would impact how my adult life could pan out. These decisions had to do with things like hormone therapy.
Accessing Health Care
In Maine from 2006-2014, health care was tricky. While there were good treatments for health concerns like hypothyroidism and hormone therapy, and Boston Children’s was amazing with my Cholesteatoma procedure, some of these treatments seemed pretty generic. Doctors didn’t always seem knowledgeable on how these treatments would specifically affect females with Turner syndrome in the long run, especially with growth hormones and certain fertility concerns.
During this time I really began to cement myself in my Faith as a Christian, and learned to trust that God would provide me with what I needed to be healthy. The knowledge of these treatments has seemed to advance in leaps and bounds since then, especially hormone therapy, although some of it still is trial and error.
The Impact of a Support System
Throughout my diagnosis, my parents and younger brother have been my biggest supporters. My mom was the first one to get in touch with the Turner Syndrome Foundation around 2013 and ran in their marathon in New Jersey. Throughout those following years we kept in touch with the Foundation, and with their assistance we went to the capital and officially got Turner Syndrome Awareness month recognized in Maine in 2016.
For a short time, my mom and I had a podcast called the Butterfly Pod, and I have been focused on college, going between a couple different degrees, and focused on finding out who I was apart from my diagnosis.
Learning and Growing Through Life Experiences
I completed the La Vida experience through Gordon College in Massachusetts between 2016-2017. It was a 12-canoe trek through the Adirondack mountains in New York that included a 2 day solo portion. Through that experience, I learned a lot about what I was capable of, found some great friends, and had amazing growth in both faith and leadership that continue to impact me today.
While I have been having additional health issues come up recently as I’ve been aging, I’m continuing to work through them and not let them hold me back. As far as the future goes, it looks bright! I’m not currently in a relationship but am hoping to find my husband to settle down with and enjoy the rest of this journey.
Elementary through high school had been difficult for me due to some of the typical TS social challenges, like reading people and situations, so it was hard for me to connect with people. But I learned better social skills throughout the years, and the experiences I had in college have been instrumental in building my social confidence, and confidence overall in my abilities. I would encourage every young girl with Turners to go through something similar at least once.
Today I am 29, building a great career after graduating with a degree in English, and am continuing to build my confidence, leadership skills, and grow in my Faith with God.Â
THE 1938 COLLECTIVE IS MORE THAN A GIVING PROGRAM — IT’S A CIRCLE OF BELIEVERS STANDING FOR TURNER SYNDROME. YOUR GIFT OF ANY AMOUNT ENSURES THAT WE CAN CONTINUE TO HELP ALL PEOPLE.Â
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Written by Brooke Caron and designed by Gerely Caba.
© Turner Syndrome Foundation, 2025
