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Living

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 learn more information.

Every day
Life with TS

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

Transition to Adult Living

Continuing practices of good health & wellness into adulthood begins in early adolescence. Create a plan for transitioning into adult care.

Treatment
Options

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

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.

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.

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.

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.

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.

Discover answers to your frequently asked questions about TS.

 

 

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

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

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.

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.

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

Discover answers to your frequently asked questions about TS.

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!

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. 

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. 

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.

Discover answers to your frequently asked questions about TS.

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. 

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

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.  

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

Discover answers to your frequently asked questions about TS.

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