Caring for a child with a chronic illness such as neurofibromatosis can be a challenge, even if the illness is mild. Greater severity of symptoms can make it even more difficult. There are many medical appointments to keep, treatments to track and instructions to follow. All of this, in addition to general concern about your child's health and anxiety over outcomes, can be overwhelming. It may help to keep in mind that many children with neurofibromatosis grow up to live healthy lives with few, if any, complications.
Perhaps the most important thing you can do for your child's sake and yourself is to find a primary care doctor you 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.
You may also find it helpful to join a support group for parents who care for children with neurofibromatosis, ADHD, special needs or chronic illnesses in general. The Children's Tumor Foundation lists support groups and family events by state on its website. Or, check your local community listings for support groups or ask your doctor for information.
Extended family and friends can be your biggest and closest support network. Don't be afraid to accept their help with daily needs, such as cooking, cleaning, caring for your other children or simply giving you a needed break. Allowing them to share your journey can enrich their lives as well as yours.
Jan. 03, 2013
- Neurofibromatosis fact sheet. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/neurofibromatosis/detail_neurofibromatosis.htm. Accessed Oct. 12, 2012.
- Torpy JM, et al. Neurofibromatosis. Journal of the American Medical Association. 2009;302:2170.
- Plon SE. Neurofibromatosis type 1 (von Recklinghausen's disease). http://www.uptodate.com/index. Accessed Oct. 12, 2012.
- Evans DG. Neurofibromatosis type 2. http://www.uptodate.com/index. Accessed Oct. 12, 2012.
- Dashe JF, et al. Overview of schwannomatosis. http://www.uptodate.com/index. Accessed Oct. 12, 2012.
- Schwannomatosis. Neurofibromatosis Network. http://www.nfnetwork.org/understanding-nf/what-is-nf/schwannomatosis. Accessed Oct. 16, 2012.
- Ferner RE. The neurofibromatoses. Practical Neurology. 2010;10:82.
- Find a local chapter. Children's Tumor Foundation. http://www.ctf.org/Chapter-Resources/Find-a-Local-Chapter-or-Affiliate.html. Accessed Oct. 19, 2012.
- Local groups. Neurofibromatosis Network. http://www.nfnetwork.org/nf-community-near-you/local-groups. Accessed Oct. 19, 2012.
- Babovic-Vuksanovic D (expert opinion). Mayo Clinic, Rochester, Minn. Nov. 26, 2012.
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