Turner Syndrome Foundation
The Turner Syndrome Foundation (TSF) is excited to introduce a new blog series: A Day in the Life. In this series, we’ll be interviewing and highlighting Turner Syndrome (TS) butterflies of different ages and asking them what their daily lives are like.Our goal with this series is to increase awareness of TS by offering a closer glimpse into the daily lives of individuals with TS and giving a voice to the cause. In this post, we will meet Chloe and learn about a day in the life of a teenager with TS.
Life with TS
TS is caused by a completely or partially missing X chromosome. It affects 1 in 2,000 live female births. Some of the most common physical effects include short stature, delayed puberty, infertility, and heart defects, such as a bicuspid aortic valve or coarctation of the aorta. Those with TS also have a heightened risk of developing bone fractures, weak bones (osteoporosis), structural differences in the kidneys, and scoliosis.
Patients with TS are also more prone to developing ear infections, and over 50% of adults with the condition have sensorineural hearing loss. Also, nearsightedness, farsightedness, and red-green color-blindness are among sensory differences found in those with TS.
Due to these conditions, those with TS must regularly visit cardiologists, endocrinologists, opthamologists, orthopedists, audiologists, and other specialists to ensure they are receiving proper medical treatment. As children, many with TS take daily growth hormone therapy (GHT) injections, and later estrogen replacement therapy (ERT). A lifetime of appropriate medical care is a necessity for anyone with TS.
Specifically, many young women find their adolescent years with TS difficult, like all girls. However, they are often falling behind in height, sexual development, and even socially. Let’s learn about a day in the life of a teenager with TS. Let’s meet Chloe, a 17-year-old butterfly, who told us how TS has impacted her and what she has learned throughout her journey.
Chloe's Story
My Diagnosis
I was diagnosed with TS at age five. My mother made sure I knew that I was different but didn’t tell me the details until I was older. Because I have mosaic TS, my symptoms are much milder than others’. Those with mosaic TS have less severe physical effects because they have a missing X chromosome in only some of their cells.
TS has still has a significant impact on my life. I don’t currently take hormones, but I did when I was younger. I would be on estrogen, but it is not needed. My female development has proceeded as normal; I do have breast growth and I menstruate. This is probably due to the mosaicism, but I still did not expect it. My menstrual cycle will most likely disappear.
I have the short stature and ears characteristic of TS. Younger patients with TS will likely take growth hormones daily and start estrogen therapy in adolescence. But it’s important to remember that these treatments are not permanent and that you are not alone!
"It's important to remember ... that you are not alone."
My School Life
I have always been very ambitious and dedicated to my education. At school, I face challenges with my math classes and my height. I attend Mayland Early College Hight School in Spruce Pine, North Carolina, so I have high school and college classes. I will be graduating next year with an Associate Degree. My classes have been very difficult; the college-level biology classes have been the hardest. My favorite subject is science. I have been pushing through my learning at school and succeeding toward earning my degree. This is proof that TS butterflies can achieve anything they put their minds to!
How I Cope with TS
Due to physical differences, some people with TS might, unfortunately, feel some insecurities about their physical appearance. I encourage you to find a hobby that will help you relieve some of that and be your true self. I enjoy writing and art; particularly sketching and painting. Art gives me a lot of peace; it has helped me cope with my TS diagnosis and mental health. Doing relaxing activities, such as art, writing, or playing music can be a very healing way to persist through any struggles you might be facing
Learning from My Experiences
I have learned to be strong from having TS. Knowing that I have challenges to overcome gives me strength. I am proud of all I have done. TS has made me who I am. I would not change it for anything. TSF has given me a place where I can feel seen and heard. I was always uncomfortable talking about my TS diagnosis, but hearing others talk about their journeys has made me more open.
How TSF Can Help
Chloe is a shining example of positivity, strength, and persistence. We greatly appreciate her kind words and everybody who participates in our blog and our other programs! TSF offers many resources and initiatives for awareness, learning, and support, so be sure to take a look at some of our other programs, like Star Sisters and the Awareness Committee. Always remember to stay strong and that you are not alone!
Also, please check out specific information on TS in adolescents here.
Written by Chloe and Canon Pham, TSF volunteer blog writer. Edited by Susan Herman, TSF Blog Coordinator.
© Turner Syndrome Foundation, 2022
