Living with Turner Syndrome | Turner Syndrome Foundation

Living

living with turner syndrome

Caring for a Child with TS

Caring for a child with TS can be challenging, but there are resources to help you better understand and do your best in raising your child living with Turner Syndrome.

Individual living with turner syndrome

Adult Living

Every day living with Turner Syndrome can affect many aspects beyond health. Learn what you can do to manage your health & wellness.

Transitioning to adulthood

Transition to Adult Living

Continuing practices of good health & wellness into adulthood begins in early adolescence. Create a plan for transitioning into adult care to empower you or your daughter living with Turner Syndrome.

treating turner syndrome

Treatment
Options

There are treatment options to improve quality of life and treat complex health issues related to Turner Syndrome. Learn what you need to know to manage your health.

Life Stages

Understand Turner Syndrome throughout all stages of life. A well-informed caregiver will find what they need to know to advocate for their child to ensure the best possible future. Information for expectant parents, parents of newborns, early childhood, adolescents and transition to adult care is available.
Life Cycle

After the Diagnosis

Living with the idea and coming to terms with a recent diagnosis is a different process for everyone. There is neither a right or wrong way of when you decide to share the information or who you share the information with. Always remember that TS does not define a person.

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Sharing the Diagnosis

Establishing good relationships and ensuring the best possible care for your child starts with open communication. Have confidence and use your communication skills to self-advocate.
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Cognition & Learning

The impact of TS can create various cognitive issues, as well as social issues, for all different ages. Become familiar with the impact it can have and learn more about non-verbal learning disability, ADD/ADHD, and more.
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Finding Medical Care

Our map is a user-friendly, growing resource that lists specialized centers of care in the United States. Use this tool to find care near you and submit the doctors you or your child see so it can be added to our list of resources.

Mapped Resources

Frequently Asked Questions

Discover answers to your frequently asked questions about living with Turner Syndrome.

FAQ’s Parents & Caregivers

SOCIAL & EMOTIONAL WELL-BEING

Social & emotional health is often a concern for Turner Syndrome patients and is foundational for academic and social achievement, and overall success.

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Self Advocacy

Understanding ones needs and rights is essential to self-advocacy at home, school or work.

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Safety on the Go

Independent living, traveling, off to college or camp, these are times when you must think of safety on the go. An Emergency Contact Card (ECC) can speak for you in case there were an emergency.

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Career Advancement

Workforce development is a government lead program to assist with helping people get back to work. They are regionally located and will provide mentoring and training to assist with resume, interview skills and placement.

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Assistance

Managing a complex health condition can sometimes feel all consuming. But, there are assistance programs available to provide relief in the time of need and help you live to the fullest. Here you will find some curated resources you may find helpful.

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FAQ’s Everyday Life

Discover answers to your frequently asked questions about TS. FAQ’s Everyday Life

Early Adolescence

Transition from pediatric to adult care usually begins early adolescence. It is as much a parent’s role as it is a physicians. An adolescent is slowly taught to assume responsibility for managing her own health. This is an exciting time of maturation and this process is integral to her future health & well-being! Learn More

Social Camps & Retreats

Socialization & Friendships are important to the emotional development of adolescents. A number of events are available throughout the year to foster social connections with others also affected by TS.  Learn More

Post-Secondary Education

Learning challenges are not necessarily a barrier to obtaining a certificate, degree or satisfying occupation. Many colleges and vocational schools offer programs with accommodations, if needed.  Securing a satisfying occupation and financial independence is important for personal growth and peace-of-mind.  Learn More

Star Sisters Unite!

Star Sisters is a mentorship program for adolescents who would like to belong to a group for support. There are ongoing opportunities to connect, learn & grow.

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FAQ’s Transition to Adult Life

Discover answers to your frequently asked questions about TS. FAQ’s Transition

TREATMENT OPTIONS – GROWTH

The treatment for growth failure is Growth Hormone. This treatment is recommended according to the clinical guidelines. Treatment will begin early in life for the best outcome.  Learn More

TREATMENT STRATEGIES – GROWTH

Adherence to treatment will result with the best possible outcomes. Here you will find some strategies to help initiate and maintain regular treatment.

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TREATMENT OPTIONS- ESTROGEN

Sexual development and reproductive health are initiated and maintain through the introduction and management of hormone replacement therapy. This treatment begins early in adolescents and until the natural age of menopause.   Learn More

TREATMENT OPTIONS- FAMILY PLANNING

Reproductive health & family planning are topics that require much planning and consideration. Learn More

FAQ’s Treatment Options

Discover answers to your frequently asked questions about TS. FAQ’s Treatment Options

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