While there continues to be improvements in awareness, health care, research, and understanding of Turner syndrome, which I have seen firsthand since I was diagnosed around 2006-2007 at 10 years old, there is still a long way to go in improving health outcomes and quality of life. Many of the advances we have today exist
Community Voices: Why Advocacy Matters in Turner Syndrome Read More
Turner syndrome (TS) impacts about 1 in 2,000 women and girls all over the planet. For the families whose developing baby receives this diagnosis, it often marks the beginning of a difficult journey, since the medical odds are stacked against long-term development for the fetus. Conversely, for women surviving with TS, there are health factors
Understanding Pregnancy Loss in Turner Syndrome Read More
In part one of this blog, we covered the lymphatic system, what lymphedema is, and how to recognize early signs. In this blog, we will discuss how lymphedema is diagnosed, treatment options, and how to advocate for yourself or your child. Information presented in this article comes from the webinar “Understanding Lymphedema.” Diagnosis and Clinical
Lymphedema in Turner Syndrome: Diagnosis & Treatment Read More
“You are in control of what happens to your body” is a phrase I have often said to my patients. In the nine years I’ve worked as a registered nurse, I frequently encountered patients and families who felt defeated, unheard, and powerless in making decisions about their own health. Many of them shared that they’re
A Nurse’s Guide to Self-Advocacy in Healthcare Read More
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
Expecting a Baby with Turner Syndrome: How to Prepare for Birth & Beyond Read More
What Are School Accommodations? School accommodations are designed to help students with different learning needs succeed in the classroom. It is important that both parents and teachers do their best to help support and advocate for students with Turner syndrome. This can look like making sure all proper paperwork is in place, going to all
Five School Accommodations to Support Students with Turner Syndrome Read More
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
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
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