Self-management

Coping and support

Caring for a child with a chronic condition such as neurofibromatosis can be a challenge. It may help to keep in mind that many children with neurofibromatosis grow up to live healthy lives with few, if any, complications.

To help you cope:

  • Find a primary care doctor you can trust and who can coordinate your child's care with other specialists. The Children's Tumor Foundation has an online tool to help you find a neurofibromatosis specialist in your area.
  • Join a support group for parents who care for children with neurofibromatosis, ADHD, special needs or chronic illnesses in general.
  • Accept help for daily needs such as cooking, cleaning, caring for your other children or simply giving you a needed break.
  • Seek academic support for children with learning disabilities.