FAQs - Living with TS

Below are frequently asked questions that you or someone you know may have. These questions and answers are meant to be used as general information to help you learn more about day-to-day life with TS.

How common is TS?

TS occurs in an estimated 1 in every 2,000 females. Every 8 seconds a baby is born with Turner Syndrome. Sadly, only 1-3% will survive birth. More lives are taken by TS than those who survive. More than 80,000 Americans live with this complex condition.

In what ways will TS affect my everyday life?

Since TS affects different people in different ways, there is no straightforward answer to this question. Some common ways that TS could adversely affect everyday life are cognitive issues (visual spatial tasks, memory, directional sense), psychosocial issues (low self-esteem, isolation, depression), thyroid issues, obesity, diabetes, hearing deficiencies, and more. Individuals with TS may struggle with social skills such as: empathy, eye contact, gestures, adapting to situations, interpreting meaning, and more.

TS uniquely affects individuals. Many issues, when present, can be overcome with early intervention & treatment. Self-advocacy and knowledge are essential to steward positive outcomes.

What are some ways I can manage my TS?

Educating yourself and understanding the implications of TS and how it may affect you is very important. Another important tip is to receive timely diagnostics at regular intervals. As needs arise, they should be attended to and taken care of sooner rather than later. Your doctors also play an important role in managing any health concerns/risks and complications that come along with TS, such as osteoporosis, infertility, cardiovascular problems, autoimmune diseases, etc. You are your best advocate.

How can I manage my TS in school?

For elementary, middle, and high school aged children, it would be beneficial to have specific learning needs assessed. Following that, consider looking into special education classes, which would mean creating a plan called an Individual Education Plan (IEP). This is an outline of objectives and services that will help achieve the best possible outcome in school. For college aged students, most schools have an office of disabilities that students can go to receive help through the institution. You will need to provide proper documentation to the office of disabilities and based on your needs, they can offer things like extra time while taking exams, having someone take notes for you, and much more.

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