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After Diagnosis

 

Coming to Terms
Sharing the Diagnosis
Building a Supportive Team
Self Advocacy
Getting organized!
Stay Positive!

Coming to Terms

Coming to terms and sharing the diagnosis of Turner Syndrome is an individual process from discovery to disclosure.  Health information is sensitive and for many private. There is no right or wrong way to share the diagnosis.

Acceptance

It is important to first claim your own acceptance of the disorder. If you need help finding acceptance of the diagnosis and possibly the medicalization of yourself or your child, you should consider speaking to supportive family members, a healthcare provider, a trained counselor, or clergy.  Take the time you need to process all of the information you will need to know. It may take a while but in time you will come to realize you are on a path to acceptance and life will go on.


Sharing the Diagnosis

Speaking 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."
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Speaking With Others

Physicians

Managing a complex disorder entails coordination and communication of many providers. There should be full disclosure with medical providers.

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 behavioural issues.
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Building a Supportive Team

Medical Providor

Building a well-informed and collaborative team of physicians is essential.


Educators

Positive educators in a least restrictive environment is beneficial to the student. If the child is exhibiting educational or social difficulties, you may ask for services for conditions associated with TS.


Community

Safety should always come first.  You may consider sharing vulnerabilities with or without labeling the condition, and encouraging particpation 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 caring support of family and friends as you navigate through the emotions of diagnosis, acceptance and beyond. 
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Self Advocacy

The best line of defense is to be proactive in everything you do.  The first place to start is to understand your rights.  We have developed tools that can help patients learn navigate through medical and insurance systems. Learn more about self advocacy

Getting organized!

Managing a complex disorder will require that you get organized. Keep good records with a two binder system to keep all of your important papers in order. One binder for medical records and the other for education. Use plastic card holders and pocket folders to organize documents by specialty. Use a small notebook to write questions before and during visits. Write down your thoughts. These simple tools will help you stay organized and help you feel in control.  
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Stay Positive!

Your experiences affects the way that you feel, think and act. Just as you need to care for your body, you also need to care for your emotions. Learn to recognize when you need support with emotional issues. You will also find resources to turn to for support moving forward. By learning to productively express negative emotions and reduce stress, you will increase positive emotions and enhance your quality of life.
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