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
The chromosomal abnormalities that cause Turner syndrome have far-reaching effects across multiple body systems. One of the more prevalent effects of TS can be found in the heart, as congenital heart defects are present in 23-50% of all individuals with TS (Silberbach et al., 2018). The exact cause of these congenital defects remains unclear,
Hypoplastic Left Heart Syndrome & Turner Syndrome 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
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
My name is McKenna Fleming. I am 22 years old, and I was diagnosed with Turner syndrome in 2019. I am currently in a Doctorate program to become an occupational therapist. I have been so fortunate to partner with the Turner Syndrome Foundation to conduct my capstone project research study on the lived experiences of
Researching Social Skills and Turner Syndrome: Findings from a Virtual Training Study Read More
The Turner Syndrome Foundation is proud to announce its involvement in the Network for Advancing Sex Chromosome Aneuploidy Research Readiness (NASCARR), a newly funded initiative through the Rare Diseases Clinical Research Network (RDCRN). This partnership represents an important step forward in advancing research, collaboration, and long-term progress for individuals with Turner syndrome and the broader
TSF Joins Network for Advancing Sex Chromosome Aneuploidy Research Readiness Read More
Subscribe to our Newsletter
Subscribe to our Newsletter
