NEWLY DIAGNOSED
You just received a diagnosis. Here's where to start.
A Turner syndrome diagnosis can feel overwhelming. We’ve been walking alongside families like yours for 15 years — and we’ve built this guide to help you take the next step with confidence.
You're Not Alone
TSGA was founded by parents of girls and young adults with Turner syndrome. We have stood in your shoes, and we know that a diagnosis and the months that follow can be frightening and overwhelming. It is important to learn about Turner syndrome from reliable resources so that you may become your own best advocate or the best advocate for your loved one. We have compiled this list of resources to arm you with knowledge and empower you to understand Turner syndrome care and ask questions of your care team.
Please know that you are not alone. You have entered a unique community of support that is as diverse and wonderful as our daughters, sisters, wives, and friends that live with Turner syndrome. We hope you find another girls, women, or families to connect with in your local community, but if not, there is a large community of patients and advocates on Facebook. When you are ready to reach out, you will find that the shared experience of living with Turner syndrome will provide support and connection that will empower you to be a stronger advocate for your loved one.
Understanding the Diagnosis
Turner syndrome (TS) is a chromosomal condition that affects females, occurring when one X chromosome is partially or completely missing. It affects approximately 1 in 2,500 live female births.
TS is not a disease — it is a genetic variation that affects development in specific, well-understood ways. With proper medical care, most people with TS live full, healthy, and independent lives.
Common features may include short stature, ovarian insufficiency, and heart or kidney differences — but every person with TS is different. The spectrum is wide, and many features are manageable with early intervention.
Resources
TSGA’s tools page offers practical resources including care guidelines, cardiac screening recommendations, growth charts, hormone therapy guidance, and health checklists for TS patients