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Identifying Explaining Managing Supporting Consultation Video
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Are other resources and tools available?
Hannah's parents ask about additional information and sources of support for families.
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Andres talks about ways to get support.
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Ignorance about NF1 often produces a distorted view of the disorder. Open communication with those caring for your child can help you develop and maintain an accurate picture of your child's situation. Finding support from others can help you manage the uncertainty inherent in the disorder.

Many parents find it useful to keep careful track of a child's care. We've developed a three-part patient care log that may be helpful in tracking medical visits and information. Here is how to use the log. Download the documents to your computer and open them. You'll need Adobe Acrobat software to read these files, and it is available for free at Print out each of the three pages and place them in a binder or folder. Here is what each form is for:

Patient Information: Here please list details about the person with NF1 and the medical providers, including contact information. This should be updated as new information is available.

Visit Summaries: On this page please list key details of up to four medical appointments. You may photocopy this form as many times as needed.

Visit Worksheet: This page provides more space and asks more detailed questions about a single visit. It is designed for use before, during, and after the visit, as a way to make sure important questions get asked and answered. It may also be used between visits as a way of tracking developments in the patient that should be brought up at the next visit. This page may be photocopied as many times as needed.

The log is designed so that each visit will have an entry in the Visit Summaries page, and a worksheet page of its own with fuller detail.

In addition to these worksheets, you may wish to include any documents you receive from a medical provider relating to NF1 in this log. These might include test results, for instance. Such documents should be annotated with the date and noted in the log, so that someone examining them later can determine the link between a specific document and a visit.

Feel free to adapt or change the log in any way that suits your specific circumstances. As noted elsewhere, NF1 is an unpredictable disorder, and no two patient logs will necessarily look the same or require the same level of detail. There may be elements that are irrelevant to your specific case, or the forms may lack blanks for information which is key for you. Please make any changes as you or your providers determine.

It is appropriate for parents to maintain the log for children with NF1, and then to pass on this responsibility to the patient as he or she becomes an adult.

Mastering medical facts about NF1 is an important part of managing the disorder, but this alone cannot relieve the uncertainty of NF1. Many families seek professional guidance from genetic counselors and mental health professionals. Family and friends can also be a source of support. Providing them with accurate information about NF1 allows them to better support you and your child.

Other families living with NF1 can share experiences, concerns, and advice. The National Neurofibromatosis Foundation can provide information and opportunities to meet others dealing with the condition: 1-800-323-7938 / 1-212-344-NNFF. Neurofibromatosis, Inc. is also a resource for patients and families: 301-918-4600 or 1-800-942-6825.

Finally, the Internet can be a useful resource for learning about NF1 and finding additional support. As is the case with all media, it is important to be a wise consumer. Some of the information you find may not be for you. It could also be incomplete, inaccurate, out of date, personal, biased, or partisan. Be a wise consumer -- check the source. If you have questions, take them to your doctor. And if you're looking for information for your child, read it together once you've determined that it's appropriate.