Lymphedema is common in individuals with Turner syndrome, affecting about 2 out of 3 people in their lifetime. Lymphedema is commonly misunderstood and underdiagnosed, needing more research in diagnostic tools and individualized treatment. This blog will give an introduction into the lymphatic system, lymphedema, and how to spot early signs. A second part will highlight […]
Lymphedema in Turner Syndrome: Signs and Symptoms 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
In my practice as a registered nurse, I’ve met many patients who openly shared with me the following self-talk before a doctor’s appointment: “What’s the point, nothing will change.” “Why am I even seeing the doctor? They’re just going to do the same thing, ask the same questions.” “I already know what’s wrong with me.
Improving Patient-Provider Communication Through Motivational Interviewing Read More
What is Turner Syndrome? Most people are born with two sex chromosomes. Females inherit a pair of two X chromosomes, one from each parent, while males will inherit an X chromosome from their mother and a Y chromosome from their father. Girls and women with Turner syndrome (TS), however, only have one X chromosome, due
The Signs of Turner Syndrome in Pregnancy & Newborns 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
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
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