Our Turner Syndrome Story My name is Niki Jacobs, and I am a proud mom of a 5 year old, spunky, spit fire butterfly named Eliana. She was diagnosed with Turner syndrome in 2025 after her amazing pediatrician put a handful of puzzle pieces together. We were lucky she was aware of what Turner syndrome
Tips for Starting Growth Hormone Injections in Turner Syndrome Read More
Navigating Healthcare with Turner Syndrome Navigating the healthcare system can be confusing and frustrating—even more so when living with a genetic condition like Turner syndrome (TS). As someone with TS, I’ve often walked into doctors appointments only to discover the provider has little to no knowledge of the condition. These moments can leave you feeling
Navigating Healthcare with Turner Syndrome Read More
When Lia’s mom, Ashley, received her daughter’s Turner Syndrome (TS) diagnosis at just 12 weeks gestation, the world shifted. A flagged NIPTS test, followed by confirmation through amniocentesis and CVS testing, brought a wave of fear and uncertainty. “My world came crashing down,” she shares. “Not being able to enjoy my pregnancy still sits with
Born to Be Brave: Lia’s Story and a Growing Legacy of Advocacy Read More
Living with Turner syndrome (TS) presents unique challenges and triumphs, not only for the girls and women diagnosed, but also for their families. Often, loved ones become key advocates, navigating the journey alongside them. In this post, we share the stories of three mothers, Lucia, Victoria, and Kimberly, who are dedicated to understanding TS and
From the Mother’s Viewpoint: Advocating for Turner Syndrome Girls Read More
Subscribe to our blog The Turner Syndrome Foundation’s (TSF) My Story blog series highlights the experiences of individuals, families, and caregivers affected by Turner Syndrome (TS). Their stories have an incredible ability to inspire others and make a positive impact on the TS community. For many women with Turner Syndrome (TS), infertility is a devastating part
My Story/Voices of Infertility: My Little Miracle Man Read More
Subscribe to our blog Students with Turner syndrome (TS) often have special needs in the classroom. Some experience nonverbal learning disorder (NVLD), social anxiety, or other challenges. School psychologists are in a unique position to nurture these students’ strengths and support them in their challenges. Below is a review of an article from the National
What School Psychologists Need to Know About Students with Turner Syndrome Read More
Subscribe to our blog Many parents struggle with sharing a Turner Syndrome (TS) diagnosis with their child. When is it appropriate? How do I share it? How much do I share? It is a difficult decision, but there are benefits to sharing the diagnosis and educating the child about their condition. It increases knowledge, self-advocacy,
Sharing a Turner Syndrome Diagnosis with Your Child at Different Stages Read More
Subscribe to our blog Medical advancements in newborn screening have improved the early diagnosis and treatment of chronic diseases, including Turner syndrome (TS). This screening is efficient, cost-effective, and although not frequently talked about, includes routine tests that take place prenatally or immediately after birth. Since September is Newborn Screening Awareness Month, we will take
Turner Syndrome and the Importance of Newborn Screening Read More
New Resource for Expectant Parents: Prenatal Testing & Information About Turner Syndrome booklet. Learn more
New Resource for Parents Expecting a Baby with Turner Syndrome Read More
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