Expecting a Baby with Turner Syndrome: How to Prepare for Birth & Beyond

Receiving a prenatal diagnosis of Turner syndrome (TS) can feel overwhelming. You may be experiencing a wide range of emotions—fear, uncertainty, sadness, confusion, hope, or all of the above. Many parents describe feeling as though their world stopped the moment they received the news. One parent, Rena’e, recalls, “The tears, confusion, worry, doubt, and sadness […]

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“She’s Just Petite”: Susan’s Delayed Turner Syndrome Diagnosis

Diagnosed at 10 years old, decades later, Susan looks back at life with Turner syndrome (TS). My Turner Syndrome Diagnosis For me, the indication something was amiss was primarily my short size, but doctors back then weren’t really trained to look for Turner syndrome. I am still not completely sure that they all are today.

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My Story: Alyssa Jefferson

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

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Prenatal Diagnosis of Turner Syndrome: Stories & Advice from Experienced Mothers

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

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“You Have to Be Loud”: Voices from the Turner Syndrome Community

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

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Decades of Strength: Rita’s 80-Year Journey with Turner Syndrome

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

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Paths to Parenthood with Turner Syndrome

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.

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Introducing Mike McDowell: TSF Board Member

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

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