As noted elsewhere in the site,
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
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.