As part of its monthly My Story series, the Turner Syndrome Foundation (TSF) highlights individuals with Turner Syndrome (TS) and their parents/caregivers. In this post, we present the story of Olivia was diagnosed in utero. She discusses how she has navigated life with TS and shares advice for patients and parents. Note: As always, everyone’s journey […]
My Story: Advice for Patients and Parents Read More
Subscribe to our blog In this post, we will share adult care guidelines for patients with Turner Syndrome (TS). We aim to provide a general overview of suggested physician visits, tests, and monitoring to ensure prevention of potential health concerns. Note: The information in this post is educational and should not replace medical advice from
Adult Care Guidelines for Individuals with Turner Syndrome Read More
“I have come to realize that there are other families out there that are struggling with similar issues. I recognized there was a need for a 24/7 Caregivers Group to help and support each other.” -Lori Kobular, mother of a woman with TS Each individual with Turner Syndrome (TS) is unique, and some have complex
Announcing 24/7 Caregivers Group Read More
Do you or a loved one have health challenges due to Turner Syndrome? Struggling with finding the doctors you need in order to stay healthy? This article will help you learn how to find doctors that can help you with your specific health needs, called specialists, and how to refer others to specialists that have
How to Find a Turner Syndrome Specialist Read More
Written by Katie Steedly Curling, PhD, writer, and guest blogger for the Turner Syndrome Foundation (TSF). Katie writes monthly about her experiences living with Turner Syndrome (TS). In this article, she reflects on finding her “something”–a cause that speaks to her and allows her to contribute to her community. The Well of Ancient Mysteries To look
Finding Your “Something” Read More
Do you have a child or loved one who has Turner Syndrome (TS) and needs growth hormone therapy (GHT) but cannot afford it? Do you know another parent in this situation? Read below to learn about what financial resources for GHT that could help you or other parents. Financial Resources for Growth Hormone Therapy Connections
Financial Resources for Growth Hormone Therapy Read More
Subscribe to our blog Growth hormone and estrogen therapies are among the most common treatments for individuals who have Turner Syndrome (TS). Short stature affects at least 95% of all individuals with TS and is the most consistent and readily recognizable clinical feature of TS. Additionally, only 16% of those affected have spontaneous puberty, and many
What Are Growth Hormone and Estrogen Therapy? Read More
This month, we are discussing all kinds of advocacy, which includes self-advocacy. To be a self-advocate means to understand your needs and speak up for them until you get what you need. Sometimes, this can be intimidating, like if you’re talking to a doctor or your boss about an unmet need or accommodation. Self-advocacy can
Self-Advocacy Tips for Healthcare, School, and Work Read More
Written by Katie Steedly Curling, PhD, writer, and guest blogger for the Turner Syndrome Foundation. Katie writes monthly about her experiences living with Turner Syndrome. In this article, she discusses recognizing your beauty in a world that often focuses on the external. You’ve got to get up every morning with a smile on your face,
Recognizing Your Beauty Read More
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