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. […]
“She’s Just Petite”: Susan’s Delayed Turner Syndrome Diagnosis Read More
Briana and her husband have two children, Aiden and Avi, who were 10 and 8 years old when Briana learned she was pregnant in December 2022. She states, “It was right before Christmas when we learned we were expecting twins. So we surprised all our family on Christmas Day!” Briana had the routine blood tests
My Story: Two Babies, One Unexpected Diagnosis Read More
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
The transition to college from high school can be daunting for any 18 year old, or even anyone going back to school, especially when it can sometimes mean relocating away from your familiar support system. For those with conditions like Turner syndrome, there may be additional challenges to consider that the average student might not
Advice for Girls with Turner Syndrome on Going to College 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
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
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