Your browser does not support script
Identifying Explaining Managing Supporting Consultation Video
home | about this site
site map | enhanced glossary
How do I care for and support my child?
Consultation
Hannah's parents ask about the likelihood of her having a learning disability.
[2:32]
Read transcript
See more
Expert Interview
Dr. Korf discusses how to support a child with the disorder and respond to potential complications.
[1:54]
Read transcript
See more
Personal Story
Megan talks about her learning disability and the positive impact of her new school.
[1:01]
Read transcript
See more

As noted elsewhere in the site, NF1 has variable symptoms and thus variable impact on a child's life and the lives of those who provide care. A key step in caring for your child is educating yourself about NF1, which will enable you to better understand the condition, its symptoms, and how it relates to your child. A child with NF1 is likely to look to a parent for information and reassurance; these are best provided when founded on a basis of accurate knowledge.

The child with NF1 should not be treated as ill or excessively fragile. There is no need to restrict activity, unless the child has a particular complication that would be prone to injury.

Another key element of supporting a child with NF1 is to make sure that appropriate and regular medical follow-up occurs. In part, this takes the form of being alert to medical changes in your child and bringing them up, as appropriate, generally at regular annual visits. You should keep track of medical tests, visits, etc., so that relevant information is available. The forms in the tools section of this Web site may assist in that task.

In order to succeed in school to his or her full potential, a child with NF1, like any child, needs parental support and involvement. Follow your child's progress in school, and be alert to any need for additional help. Be prepared to advocate for your child with teachers and administrators, when needed. This may require disclosing the diagnosis and educating such individuals about NF1. That is a family decision, dependent on the particular circumstances.

We encourage the parent to work as the child's advocate, in both the medical and the school setting. This means attending to what is going on with the child and communicating about this in appropriate ways to the child, medical personnel, and school personnel. Educating yourself and staying current as the understanding of this disorder grows is also key.