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Community Voices: Why Advocacy Matters in Turner Syndrome
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
Understanding Pregnancy Loss in Turner Syndrome
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
Lymphedema in Turner Syndrome: Diagnosis & Treatment
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
A Nurse’s Guide to Self-Advocacy in Healthcare
“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
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
Five School Accommodations to Support Students with Turner Syndrome
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
