We know Turner syndrome has its difficulties. But what if you could help foster a positive community using your experiences having TS?
Read about Kayla’s TS journey and her encouragement to others with TS!
Who is Kayla?
Who am I, and who do I want to be? Those are questions that everyone asks as they transition into their teenage years and adulthood. My name is Kayla, and for me, the best answer that I can come up with is caregiver.
Since I was young, I always enjoyed helping others. I remember helping my grandmother with her garden, my mom around the house, and my dad with the farm animals we raised – I loved it! I even wanted to be a teacher when I grew up!
College ended up changing my path. Now I work in the hospitality industry helping others have great vacations! Helping others is also why I wanted to get involved with TSF.
My Backstory
I was diagnosed with Turner syndrome at birth. My parents found out right away while I was in the hospital. I spent a few weeks in the NICU as a preemie before I was able to head home. The doctors told my parents all about TS and what I could experience later on in life, and they continued to educate themselves onwards.
When I was in elementary school, my mom told me about my diagnosis. I remember being more accepting of it after a few questions. I also started seeing an endocrinologist at my local children’s hospital.
In middle school, I started to see my doctor more often and was put on growth hormone supplements. My only struggle with this medication was that it was an injection, and with my parents being divorced, I ended up carrying around a lunchbox of medication everywhere. Sleepovers at friends’ houses were interesting for this reason. But it helped me find my best friends (and they still are to this day) since they were understanding, so I can’t complain!
Other kids at school weren’t as understanding as my friends however. A lot of them asked why I was so short, or had a lunch box with me but didn’t bring it to lunch. For context, it was a struggle to reach 5’0”. It was awkward and it stung, but I shook it off. I focused my time enjoying being on the speech team and running, blocking out the negative commentary.
I never experienced any major complications due to TS. My only real struggles were in middle school socially, and overall with math and science. For instance, my brain has trouble picturing equations in geometry. I had great teachers and tutors for those classes, and learned the best way for me to learn with how my mind works. For example, I have to draw things out to see why the equations make sense.
In high school, I stopped the growth medication, and found my place within the varsity cross country team and theater department. I was also very involved with my church. I didn’t get any direct questions as much anymore, and it was a great change.
My life began to feel a lot more normal, and I loved it. Now I live in Utah with my husband and our two dogs!
My Message to the TS Community
My message to TS parents specifically is to ask questions. Ask questions to your daughter and her doctors: How does she feel? What does she think would help her? What do you see that she needs? Would a second medical professional opinion be helpful?
Ultimately, TS parents cannot understand the struggles that can come with TS because they aren’t their child, but they can ask and get as close to understanding as possible. Listening is key.
TSF’s Star Sisters community is also an incredible way to meet other parents of children with TS, or to practice socializing with other women that have TS. It gives us a safe space to feel comfortable and understood.
But my overall advice would be to get whoever you know with TS involved in the TSF community.
Calling All TS Community Members
We’re calling on all TS community members – parents, friends, colleagues – to support TSF this year!!
Whether it be through a donation, starting your own fundraiser, setting up a proceeds benefit with your local restaurant, or other ways to give, you can help us spread awareness and foster a positive community.
Like Kayla, TSF is a caregiver for all those affected by Turner syndrome and we hope to continue being the community people need. But without your support, we won’t be able to keep helping. Help us help others today!
Written by Kayla Crawford, TSF volunteer blog writer. Edited and Designed by Riya Ajmera, TSF Blog Coordinator.
© Turner Syndrome Foundation, 2024
