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This site has been created to help you learn what you need to know about Turner Syndrome.  Our goal is to advance communications about this common, yet uncommonly known disorder, so that it can be understood and supported in a classroom setting. 

You will learn about the clinical, cognitive or social impact of this disorder.  We know early identification is important to enhance long term outcomes.  Early intervention and ongoing support is essential.

Questions or comments? Contact us



Did You Know?

Each journey is unique and often complicated.  Patients seek answers and providers and educators need impactful resources and support to help these young scholars. New science through research is the answer.



Each diagnosis has an individual story and outcome…

• She met all of her milestones, and grew to become a delightful child - expressive, intelligent, but especially petite in size. This child would later be diagnosed with a genetic abnormality.
• A routine sonogram suggested a cystic hygroma - more genetic testing and medical options.
• The baby was born in distress  – one look and they knew she had Turner Syndrome.
• Every day counting down to her birth, praying for life, for health and for her future.
She is multi-disabled and I am her caregiver.
• One day all of her symptoms told a story, a story of a syndrome called Turners.
Infertility in my twenties and now a new diagnosis to navigate.

We understand their story, and we can help.

A Guide for Teachers: Turner Syndrome in a Classroom Setting
Statistically, in 1 out of every 160 classrooms there is a girl with Turner Syndrome. This guide will help teachers Identify and understand cognitive strengths and weaknesses, social functioning issues, and recommendations to create an optimal learning environment.

Teachers: A pathway to a lifetime of success begins with collaborative effort and support of parent and teacher.
Administrators: A well-informed faculty can make a difference in a young girl's life.
School Nurses: Girls at 5% or below normal height along with other possible indications are recommended for screening for Turner Syndrome. 
Order A Guide for Teachers: Turner Syndrome in a Classroom Setting


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Psychological & Social Effects
Nonverbal Learning Disability (NLD)
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A Social Worker's Perspective



As we know from clinical experience, and extensive literature, to be included and accepted by teenage friends is probably the most important factor – after actual physical appearance – that contributes to self-esteem. Given the outright rejection related to delays in emotional development as well as short stature and dysmorphic facial features, it is not unusual for a girl with TS to proceed through her teenage years without ever experiencing a close and trusting friendship.  All too often, negative peer group judgments contribute to feelings of inferiority, which can last a lifetime.

The summer months present a respite for girls to overcome difficulties and to interact with other girls sharing the same genetic anomaly and concerns.  Summer recess provides an opportunity to gain independence and confidence from engaging in educational and social programs to foster new skills, friendships, and lasting memories.  Health specific sleep-a-way camps, day camps and learning centers offer counseling and enrichments critical to the social and psychological development of girls with this disorder. See camp info


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Resources

Early Interventions
USDOE Publications
AAP ADHD Guidelines
National Dissemination Center for Children with Disabilities
U.S. Dept. of Education Provides Guidance for Teachers to Combat Bullying in Classrooms