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Identifying Explaining Managing Supporting Consultation Video
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How do I talk about NF1?
Consultation
Hannah's parents ask about when and how they should tell her about the disorder.
[1:15]
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Expert Interview
Dr. Korf offers suggestions for talking about NF1.
[4:01]
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Personal Story
Megan talks about her important relationship with her mother.
[:33]
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Talking with your child
One of the most common and difficult questions parents ask is when and how to explain the disorder to the child. There is no specific time or way to talk to a child about his or her NF. Much depends on a parent's own growth in understanding and accepting the disorder, the child's maturity level and specific manifestations of the disorder.

Ultimately, though, every child with NF1 will begin to question why he or she must go to a special doctor, or why he or she looks different from other children. Moreover, the child may begin to learn about NF1, if not from his or her parents, then from friends or the media.

This can lead to misinformation and disproportionate fear of the risks associated with the disorder. If the parents and physicians serve as the main source of information, one can be more certain that the information is accurate, balanced and at a level the child can grasp.

The key to talking with a child is to answer the child's questions honestly and in a way he or she can understand. Evasive answers often provoke fear rather than provide reassurance, and false answers may impair later trust. But, there is also no need with younger children to go into great detail about possible complications of NF1. Your child's doctor can help you think about how to talk with your child.

Talking with teachers
Parents often ask whether a child's teachers and school should be informed that a child has – or may have – NF1. Almost half the children with NF1 have learning problems; parents are often concerned that telling the school could result in the child being labeled as learning disabled, setting up a self-fulfilling prophecy in the child's educational and social development at school.

Deciding to tell a child's teacher is an individual family decision. However, harm is often done if school personnel aren't informed. Without knowing about a child's NF1, the school could easily mislabel a learning problem as a behavioral problem. A frank discussion with a child's teachers can often correct common misconceptions about NF1, leading to earlier detection and treatment of learning problems.

Talking with other family members and friends
Discussing NF1 within the family follows the same lines as discussed above. It is appropriate to give accurate, but age-appropriate, information to siblings, grandparents, cousins, and others who interact closely with the child.

In the case of a child with visible symptoms of NF1, questions may arise more often and discussion may seem inevitable. The first thing to remember is that whether to talk about NF1 and how much to disclose, in any setting, is a person decision, and should be geared to the comfort level and needs of the child and the parent. Some individuals may use even casual conversation as an opportunity to educate someone about NF1 and its symptoms. Others may be private, and do not want to talk about it.

Wherever on the spectrum you and your child are, accurate information based on fact, rather than speculation, offers the most reassurance. Obviously, many things about NF1, including its course in a specific individual are not known. However, we have learned a great deal about the disorder, and promising research on several levels may reveal more. The information on this site, as well as later developments, can provide a basis for understanding and supporting those involved with this disorder.

Two other important sources of information are the National Neurofibromatosis Foundation Web site at www.nf.org and the Neurofibromatosis Inc., Web site at www.nfinc.org.