Turner Syndrome Foundation
The Turner Syndrome Foundation’s (TSF) My Story blog series highlights the experiences of individuals, families, and caregivers impacted by Turner syndrome (TS). Their stories have an incredible ability to inspire others and make a positive impact on the TS community. These serve the purpose of educating those who are unfamiliar with these types of conditions. This month, we share the story of Rebekah, who has overcome challenges to achieve academic and career success.
Note: Everyone’s journey with TS is different. Please consult with your health care provider(s) for guidance regarding your health issues and appropriate treatments.
Rebekah's Story
The Diagnosis
When I was 6 years old, my pediatrician began to notice how far below the growth curve I was falling, and referred me for a litany of tests at Children’s Healthcare of Atlanta. Through the myriad of tests, my parents and I were made aware that I had Turner syndrome. I was angry at first because I did not want to be different from my siblings and friends. I kept asking myself, “Why do I have to be different?” Everyone was paying attention to my appearance, and I feel as though the healthcare field was not well enough equipped to address the emotional component of this kind of diagnosis.
The Mental Mind Game of TS
Turner syndrome has impacted me in many areas. Since it is an endocrine disorder, multiple body systems are involved, which can present a challenge when taking care of your health.
Mentally and emotionally, the impact is most acutely felt by the overwhelming feeling of having to juggle taking care of your health and the exhaustion of constantly compensating for the lack of the missing or damaged chromosome.
Socially, people can be rude or ask inappropriate questions regarding your size and stature. I have had patients be rude enough to ask me questions such as “Why are you so short?,” and “Can you actually do that (in reference to my position as a nurse)?” Sometimes, it’s a bit of a fight to be seen as an adult in public spaces. There are many people who believe that I am younger than I am, and because of this, I have always been self-conscious about my height. Whenever I can, I wear high heels to make myself taller in order to address this.
In addition, other people often struggle to understand that some things are just beyond your capability because of issues related to TS. I have had peers and friends try to pressure me to do athletic things that I couldn’t do because I struggle with hand/eye coordination. In school, this made me dread things like gym class.
Overall, I feel that people should be more respectful of others. You don’t always know the story or journey of someone’s life, and you may not realize how a comment that you make can affect someone. Alongside this, it is also important to respect personal boundaries: you should be careful about asking others personal or sensitive questions that they may not be comfortable with. When women with TS take inconsiderate statements (like the examples above) to heart, it can make them feel inferior, which has fueled my desire for awareness. If TS was more commonly known, people wouldn’t be as ignorant about the impact of these kinds of comments.
I believe that TS builds a resilience in you that most people don’t have because those of us with TS have to constantly adapt and learn different ways of doing things.
Bumps Along the Way - Overcoming the Hurdles
Learning to drive was immeasurably challenging. Spatial and depth perception is a huge struggle for me as a TS patient. Parking in tight spaces was always difficult because of this. This meant that learning how to drive required a lot of time, patience, and very specific guidance from my dad. It has also meant that I’m careful to plan where I park so that I can feel confident in my ability to do it.
Another big challenge has been receiving good health care as an adult with TS. Not many providers are aware of this diagnosis and its complications, but thankfully, I was able to find an integrative practice that specializes in hormonal and endocrine disorders. Still, my HRT is not covered by insurance, and I believe that issues like that could be solved if more healthcare providers were aware of this condition and its necessary treatments.
My pediatric endocrinologist was absolutely wonderful, and is the reason I completed such a successful regimen of growth hormone treatment.
However, I didn’t know until I began seeing a nurse practitioner at the integrative practice last year that I should have been transferred from a pediatric endocrinologist to an adult endocrinologist. Therefore, my advice for others seeking care is to discuss your transfer to adult care with your pediatric endocrinologist as you are coming to the end of your growth hormone treatment.
Where I Am Now - Overcoming the Mental Mind Game
In my life, I am most proud of the fact that I persevered through the obstacles and challenges to become an RN, which is my greatest accomplishment. I am also proud to be finishing my Master’s of Science in Nursing Education and my goal is to launch a career in preparing future nurses. I fortunately didn’t struggle academically, and so I used academics to compensate for struggling in athletic activities. Though some of the physical tasks required in nursing are sometimes challenging because of my height, this has not stopped me from having a successful career as a pediatric nurse. In many ways, I feel that having TS has made me a better nurse, as it has allowed me to understand the importance of communicating directly with the child about their health and needs, including their emotional needs. I believe that it has allowed me to be a much more empathetic and holistic healthcare provider.
How TSF Has Impacted Me
I connected with the Turner Syndrome Foundation through research for a school project in the spring of 2021. They have helped me to see that I am not alone, and that there are other women out there walking the same journey as me.
TS & Mental, Emotional, and Social Challenges
Individuals with Turner syndrome are at a higher risk for a constellation of neurocognitive and psychosocial differences, although there is significant individual variability in these features. TS is associated with an increased risk for difficulties with visual-spatial reasoning, visual-spatial memory, attention, executive functioning, motor skills, and math skills.
Additionally, increased rates of social difficulties, anxiety and depression are observed. There can be significant interplay between all of these factors contributing to the behavioral phenotype.
Clinical considerations and recommendations for evaluation and treatment of psychological and behavioral difficulties are available, which can include consideration of medical commonalities in TS. Help can be provided through therapy, educational support, and medication treatment.
Further research is needed to determine the effectiveness of these treatments, including modification and validation of existing evidence-based treatments and new approaches to care.
What Do You Think?
Have you struggled with inconsiderate comments before? How have they affected you and how have you handled them?
Let us know by answering this survey so we can be better informed on the lives and needs of women with TS!
Share Your Story!
TSF thanks Rebekah for sharing her story and reminding us of the importance of awareness for Turner syndrome, as well as the need for increased support to accommodate those who are facing challenges posed by TS.
Every individual and family affected by TS deserves to be heard, and for those who wish to share their personal story, we provide you with this platform. Simply fill out this form on TSF’s website. You can share your first name and photos if you wish, or you can remain anonymous.
Each one of us can raise awareness by using our voice to create a better understanding of the impact that TS has on our lives. When you share your story, you are enabling us to tell others about the needs of this community to seek positive change. We want to hear from you!
Written by Ayvrie Tarron, TSF volunteer blog writer. Edited and designed by Catherine Melman-Kenny, TSF Blog Coordinator.
© Turner Syndrome Foundation, 2023
I can totally relate to Rebekah”s story. ALL of it! My name is Rebecca too! I go by Becky. I have had some of the same comments made to me over the years. I found out I had Turner’s Syndrome at 14 1/2 as I was starting high school (’76). There wasn’t much information back then, but I too had a wonderful endocrinologist. What I have experienced is that most physicians out of that field aren’t learned/knowledgeable about TS at all. I have questioned the curriculum in med schools. I’m 61 now, and menopause was the biggest challenge I have had. My GYN didn’t know about any process or when. We just stopped my hormone therapy. First at 46, and then tried again at 48. The first time I was still too dependent on the therapy, but the second time things went well. I notice different things with memory and cognitive abilities, but I had a large brain tumor removed so that is definitely some cause of that. I’m also “at that age.” Anyway, it was refreshing to hear someone else’s experiences. That’s why I check in at this site. Thanks! Rebecca Schleicher