Delayed diagnosis remains a major issue within the Turner syndrome community, with many individuals not diagnosed until adolescence or adulthood despite having signs and symptoms throughout childhood. This delay can have serious health consequences, particularly when important screenings and specialized care are missed. Alysa’s experience highlights why earlier diagnosis and increased awareness matter—not only for […]
My Story: Alyssa Jefferson Read More
In this article, we will share experiences of seven mothers who received their daughter’s Turner syndrome (TS) diagnosis during pregnancy. Their stories reflect a wide range of experiences from navigating the shock and uncertainty of the diagnosis, to finding knowledgeable medical care, to supporting and advocating for their daughters after birth. Turner syndrome can be
Prenatal Diagnosis of Turner Syndrome: Stories & Advice from Experienced Mothers Read More
In honor of Turner Syndrome Awareness Month 2026, the Turner Syndrome Foundation hosted a Patient and Parent Panel event to raise awareness and build community. This event brought together three panelists: two women living with Turner syndrome and one mom to a daughter with Turner syndrome, in addition to the facilitator, a woman with Turner
“You Have to Be Loud”: Voices from the Turner Syndrome Community Read More
As part of its My Story series, the Turner Syndrome Foundation (TSF) highlights individuals with Turner Syndrome (TS) and their parents and caregivers. In this post, Rita, a woman in her 80s who was diagnosed with TS at 17 years old, shares her story and how she feels so lucky, even while having faced decades
Decades of Strength: Rita’s 80-Year Journey with Turner Syndrome Read More
For many women with Turner syndrome (TS), conversations around fertility and parenthood can feel complex, uncertain, or even discouraging. While infertility is common in women with TS, it does not have to prevent them from pursuing parenthood or meaningful caregiving roles, if they choose to, in ways that align with their health, values, and calling.
Paths to Parenthood with Turner Syndrome Read More
One of the many struggles women with Turner syndrome and their families can face is a lack of understanding of the condition. This can include their own lack of understanding, or in more common cases, a lack of understanding by medical professionals, teachers, and the general public. Many get involved with the Turner Syndrome Foundation
Introducing Mike McDowell: TSF Board Member Read More
Every year, the LSU Lady Tigers women’s basketball team uses their platform for something bigger than basketball. On February 1st, 2026, they once again dedicated the day to raising awareness and support for Turner syndrome. This cause is deeply personal to Head Coach Kim Mulkey and her family. An Experience That Changed Everything We’re grateful
Thank You, LSU Women’s Basketball & Coach Kim Mulkey Read More
I am both a retired pediatric endocrinologist and a woman with Turner syndrome (TS). I have been a pediatric endocrinologist since 2000, and enjoy interacting with other girls and women with TS. My personal medical journey and pediatric endocrinology training have given me a unique perspective in the ongoing knowledge of Turner syndrome management. My
Medical Gaps In The Treatment of Adult Women with Turner Syndrome Read More
A Diagnosis That Changed Everything During my pregnancy, I was considered high risk. My amniotic fluid levels were low, and my baby was measuring smaller than expected. The doctors suspected she might be born with a form of dwarfism. I was overwhelmed with fear, uncertainty, and a fierce desire to protect the tiny life inside
My Story: A Mother’s Journey With Turner Syndrome Read More
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