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.
Dec. 24, 2015
  1. Ferri FF. Neurofibromatosis. In: Ferri's Clinical Advisor 2016. Philadelphia, Pa.: Mosby Elsevier; 2016. Accessed Nov. 11, 2015.
  2. Neurofibromatosis fact sheet. National Institute of Neurological Disorders and Stroke. Accessed Nov. 11, 2015.
  3. Korf BR. Neurofibromatosis type 1 (NF1): Pathogenesis, clinical features, and diagnosis. Accessed Nov. 10, 2015.
  4. Evans DG. Neurofibromatosis type 2. Accessed Nov. 10, 2015.
  5. Yohay K, et al. Schwannomatosis. Accessed Nov. 10, 2015.
  6. Korf BR. Neurofibromatosis type 1 (NF1): Management and prognosis. Accessed Nov. 10, 2015.
  7. Woodrow C, et al. Neurofibromatosis. Orthopaedics and Trauma. 2015;29:206.
  8. Goldblum JR, et al., eds. Benign tumors of peripheral nerves. In: Enzinger and Weiss's Soft Tissue Tumors. 6th ed. Philadelphia, Pa.: Saunders Elsevier; 2014. Accessed Nov. 10, 2015.
  9. AskMayoExpert. Neurofibromatoses. Rochester, Minn.: Mayo Foundation for Medical Education and Research; 2015.
  10. Slattery WH. Neurofibromatosis type 2. Otolaryngologic Clinics of North America. 2015;48:443.
  11. Hirbe AC, et al. Neurofibromatosis type 1: A multidisciplinary approach to care. The Lancet Neurology. 2014;13:834.
  12. Flint PW, et al., eds. Stereotactic radiation treatment of benign tumors of the cranial base. In: Cummings Otolaryngology. 6th ed. Philadelphia, Pa.: Saunders Elsevier; 20154. Accessed Nov. 10, 2015.
  13. Riggin EA. Allscripts EPSi. Mayo Clinic, Rochester, Minn. Sept. 18, 2015.