Sharing the Diagnosis of Turner Syndrome

Sharing the Diagnosis of Turner Syndrome With Your Child

Some parents chose to provide information on a need to know basis in age appropriate language. This is often applauded because when a diagnosis of Turner Syndrome is not discussed, children are often left painfully aware that they’re different, without knowing why. Talking about disorders—not just naming them, but identifying what the feelings and behaviors are that are challenging for them, helps them make sense of their lives. “This is why things are challenging for me. This has a name and other girls have it, too.”
Read this white paper to help you decide the best time to share the diagnosis with your daughter. Read more

Speaking With Others

Physicians – Managing a complex disorder entails coordination and communication of many providers. There should be full disclosure with medical providers. Building a well-informed and collaborative team of physicians is essential. Explore State Resources to find medical professionals and centers of care in your state or search providers in your area.

Educators – Many children when tested for placement will fall within the normal parameters and will not qualify for the protection of special education. By sharing the diagnosis, a child may qualify for special services if needed. Many do not want their child labeled or inhibited in any way; rather, they encourage them to work to their ability. But one cannot overlook the potential health implications for this disorder and should provide the school nurse with a copy of the NIH clinical guidelines and a brief description of any known implications; especially if there are any, cardiac, attention, vision, hearing or behavioral issues. Positive educators and a least restrictive environment are key elements for girls with Turner Syndrome to flourish in school. If the child is exhibiting educational or social difficulties, seek services for conditions associated with TS. For more information, go to Learning.

Community – Safety should always come first. You may consider sharing vulnerabilities with or without labeling the condition, and encouraging participation in a host of activities so she can decide the activity she prefers, for example drama class over softball.

Family and Friends

 – It is helpful to welcome the caring support of family and friends as you navigate through the emotions of a new diagnosis. Share with them the diagnosis of Turner Syndrome and talk about your feelings and ask for their help when it is needed.

Child – In age-appropriate terms, speak openly with your child about her health, cognitive, or social issues related to the diagnoses of Turner Syndrome. Explain why she must see several doctors for tests and treatments. Honest conversations, answering questions, and listening to concerns are mutually beneficial to the bond of a caregiver and child. Take time to learn and process your own feelings before speaking with your child. If you need help starting the conversation or finding the right words to say, consider speaking with a provider, social worker, counselor for assistance.

Tina Talks Turner’s

This video and interactive companion book was designed with parents and caregivers in mind. Parents often report withholding information because they don’t feel equipped to share the diagnosis of Turner Syndrome. Tina Talks Turner’s walks young girls through a Turner Syndrome diagnosis, from what TS is to the treatments that may become part of her daily routine. Tina is a friend and mentor that can help your daughter come to terms with her diagnosis.
Learn more.

A Social Network for Support

The Star Sister’s is a mentorship program created to help girls and women connect with others who share the same experiences. Learn more about the Star Sisters program.

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