Turner Syndrome Foundation
The Turner Syndrome Foundation’s (TSF’s) 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. This month, a resilient woman shares her TS journey and highlights the benefits having a strong support system has had on her health and well-being.
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.
My Story
As a 42-year-old woman with TS, I have experienced some physical, emotional, social, and educational challenges because of my condition, but I am strong. I am an advocate for myself and have achieved my personal goals. My parents have helped me navigate the difficult times. I am thankful for their constant support and love; it makes a huge difference.
I hope that sharing my story will help others learn more about life with TS.
My Diagnosis
When I was a year old, I could still fit into newborn clothes. My parents became concerned, my doctors ran multiple tests. However, they did not perform the test that would have shown them my chromosomes (a karyotype). My parents were told that I was just going to be a short individual. When I was 11, my mom took me to see a new pediatrician because I was developing at a slow rate. He was able to make a diagnosis because he had recently completed an internship with a TS specialist. This began my long medical journey.
My Challenges & Triumphs
When I was 16 years old, I found out that I had a bicuspid aortic valve. This means that the aortic valve of the heart has two flaps instead of three. It can make it difficult for the heart to pump blood to the body’s main artery. I had a heart attack six years ago
that was related to this condition.
Throughout my life, it has been difficult for me to read others’ emotions and understand social cues. I have to listen to others intently and examine their body language at the same time. When I was in school, I had trouble understanding the concepts that were presented to me in my math classes. There were times when I did not understand certain assignments given to me in other classes, as well. I have never been diagnosed with non-verbal learning disorder (NVLD), but after reading about it, I do believe that I have it.
I have encountered a few doctors who do not believe I have TS, even though I had a test that confirmed my diagnosis years ago. These experiences have taught me that it is essential for me to be my own health advocate.
One of the things I am most proud of is that I recently received my Bachelor’s degree. I am also a youth leader at my church. The people I interact with at church have started to feel like family and have become an additional source of support. I feel comfortable being my true self when I spend time with them.
The Importance of Family Support
The Beauty of a Strong Support System
My parents allow me the time that I need to process my emotions and thoughts without getting frustrated with me. This is beneficial to my emotional, mental, and social health. They understand that TS impacts more than just my physical health. If you are a parent of a child with TS, the best piece of advice I can give to you is to be patient. It is important to know that TS can make it difficult to process information. If this is true for your child, give them the time they need to collect their thoughts.
It is no secret that having a strong support system is essential to our well-being. We all need someone to lean on during the bad times and someone to celebrate with during times of joy. It is also
crucial that we recognize when we are feeling overwhelmed so we can be our own support person and engage in self-care.
What the Research Tells Us
Those with chronic conditions face challenges that other individuals may not encounter during their lifetime. It is important to recognize and discuss these challenges so we can improve the
outcome. Specifically, those living with a condition like TS have a higher risk of experiencing poor psychological health.
Oris, et al. (see link below) state that parental support has a greater impact on psychological well-being during early to mid-adolescence. Peer support seems to become more important for psychological functioning than parental support during mid- to late adolescence.
Ideally, individuals with chronic conditions would receive support from both their parents and peers in all stages of life. These individuals typically have the best chance of successfully managing their mental health.
One Way for Caregivers To Support Themselves
Experts suggest that written emotional disclosure (journaling) can be a beneficial practice for caregivers. It is a therapeutic writing practice that entails documenting a stressful experience and describing any strong feelings associated with the event. Riddle, Smith, and Jones (see link below) suggest that this practice can positively impact a person’s general psychological welfare.
We all face health challenges at some point in our lives. It is important that caregivers find ways to help themselves remain healthy while supporting their loved ones.
Resources for Caregivers
Are you looking for additional sources of support? Whether you’re living with TS or caring for a loved one, TSF has a number of resources for you. Some helpful links are listed below.
- 24/7 Caregivers – A strong support system involves self-care. 24/7 Caregivers is a group that provides peer support.
- Self-Advocacy – This page explains the importance of self-advocacy and provides information on local resources and medical assistance.
- Star Sisters – This is a private, online community for those affected by TS. Members can form new connections, attend informational webinars, and share their stories.
- Specialized centers – This page provides information on medical professionals and medical centers committed to treating those with TS.
- Life Stages – This page informs readers about TS at each stage of life, from pregnancy to adulthood.
- Guidelines & Resources – This page includes health resources, information on summer camps and retreats, a link to different webinars, and more. Check out the How To Parent a Child with TS webinar for free!
Thank You, Family Caregiving Heroes!
November is National Family Caregivers Month. There are many ways to be a caregiver. A person’s health does not consist of physical health alone. Mental, emotional, and social health are just as important. Caregivers support their loved ones in a number of ways, and TSF applauds every one of them for their involvement and support.
Share Your Story!
Everyone has a story to tell. TSF welcomes all parents, caregivers, medical professionals, teachers, and individuals with TS to share their story. You can submit your information here. We will reach out to you to discuss your story, and the TSF blog team will do the rest! You are welcome to share your first name and photos, or you can remain anonymous.
Every journey is different, but we can all learn from each other’s experiences. We hope to hear from you!
Sources
Parental and Peer Support in Adolescents with a Chronic Condition: a Typological Approach and Developmental Implications, National Library of Medicine
Does Written Emotional Disclosure Improve the Psychological and Physical Health of Caregivers? A Systematic Review and Meta-Analysis, Science Direct
How Chronic Illness or Disability Affects a Family, HealthyChildren.org
Written by a woman with TS and Haley Stambaugh, TSF volunteer blog writer. Edited and designed by Susan Herman, TSF Blog Coordinator.
© Turner Syndrome Foundation, 2022
