“TS Has Impacted Every Area of my Life”

“TS has impacted every area of my life."

People living with Turner syndrome (TS) are like stars in the sky. While no two are the same, there’s a constellation of common challenges that they have to shine through in their lifetime.

One young woman with TS, Julie, spoke with Turner Syndrome Foundation (TSF). While facing physical, emotional and social challenges, she has achieved several accomplishments as a leader in education. Through her story, we learn that common struggles often faced by women with Turner syndrome can be overcome. 

Physical Challenges

As a part of living with TS, Julie endures consistent knee pain. She underwent total knee replacements to treat “knock knees,” a condition where the knees bend inward to touch despite space between the ankles. 

Knock knees are common in women with TS. A 2011 study published by Trzcińska and others in the U.S. National Library of Medicine reported that more than 60% of the people with TS in their study had knock knees (Trzcińska, et. al., ).

But, this is only one of the skeletal issues commonly faced by those with TS. Other issues include a broad torso, hip dysplasia, small stature, scoliosis, and a forearm abnormality called cubitus valgus. 

TSF has written a detailed summary of the bone issues frequently experienced by people with TS here, and also an in-depth look on osteoporosis here

Social and Emotional Challenges

Along with physical health, individuals with Turner syndrome often face social and emotional challenges. Research suggests that people with TS can have difficulty forging relationships and maintaining close friendships. Differences in social processing, such as reduced facial recognition and identification of social cues, contribute to these challenges.

Julie has experienced such difficulties. “I have had to work hard at understanding others’ social cues. I have had to really work hard at listening to them and watching their body language at the same time,” she said. 

Anxiety and Depression

Julie describes her related experience with mental health:

“Mentally I feel alone often. I feel misunderstood. Emotionally, that is hard when you don’t feel understood.”

Researchers estimate that up to 52% of females with TS face anxiety or depression in their lifetimes (Hutaff-LEe, et. al, 2019). 

In a recent poll, TSF found that 100% of individuals faced lasting impacts on their mental or emotional health due to Turner syndrome.

Expressing emotions is another challenge for Julie. She struggled to put her emotions into words to share her feelings with others. “I often did not express how I was feeling and it would bottle up,” she said.

There is a path forward. Our TSF “Social Anxiety” web page provides information on communication challenges and practical strategies for such circumstances.

Julie has found her parents as her support system and acknowledges them as her “constant friends.”  

Ways of Coping

With all of these challenges, everyone has their own way of coping through the emotional and mental struggles. We asked those with TS how they cope, and here are some of the responses: 

Having a trusted person to talk to, journaling, reminding myself that this may not matter in the future, deep breaths and medicine.
Talking about it and coming to the realization that there are aspects that others will never understand because they aren’t experiencing it.
Trying to see life for what it is, nothing and nobody is perfect in this world.
Therapy and the support of my friends and family especially my mother.
Less time on the internet, getting OUTSIDE, being active, spending time with loved ones.
My support system and anti-anxiety/antidepressants.
Counseling.
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Your Challenges Do Not Define You

With all of the hurdles Julie faces, she has managed to accomplish great feats. Not only is she earning her Bachelor’s degree, but she also serves as the vice principal of a Christian school, fostering and inspiring a new generation of children. 

It goes to show that you can never tell what someone is going through behind the scenes. Your challenges do not define you, and you should not hesitate to seek out the support you need to create your shining identity. 

TSF is here to support Julie and other women who have found their strength through their journey. With our many resources, we strive to be the foundation for you and your loved ones with TS. 

Your help is what allows us to help others. So please continue advocating, joining our events, and supporting us.

Get Your Tickets!

Come support TSF at the Blueclaws baseball game for a night of fun, music, and awareness. We want you there!

Written by Kelly Carroll, TSF volunteer blog writer. Edited and Designed by Riya Ajmera, TSF Blog Coordinator.

© Turner Syndrome Foundation, 2024


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