New Diagnosed with NF1 - A Guide to the Basics

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SHARING THE NEWS

Sharing the News One of the more difficult parts of dealing with a new diagnosis is telling close friends and family, or even the child who has the condition. Although everyone has their own strategies and personal preferences for what and how to tell others, the following suggestions may help make the process a little bit easier. WHO TO TELL It is not uncommon for this question to come up when talking with a family member, a close friend, or maybe even a teacher—especially if the child has visible signs on the body, or NF-related learning difficulties that affect their school performance. Many people reveal their diagnosis to others only if it seems important to their relationship (for example, to a close friend, or a teacher). Letting the child also have a say in who to tell can be helpful as well. WHAT TO TELL When you decide to share your or your child’s diagnosis with others, you must also decide how much information to share. You might share in a limited way, such as discussing the learning difficulty aspects of NF1 with your child’s teacher. Other times, it is helpful to have someone with whom you can share more details, including all of the emotional ups and downs that go along with the diagnosis. SOME TIPS FOR TELLING CHILDREN Children prefer routine and certainty. Although neurofibromatosis is filled with uncertainty, the more you can establish certain routines and normalcy for the child, the more comfortable the child will be. It is also important that you tell the truth. Creating a trusting and honest relationship is very important. Keeping a child in the dark can sometimes create more anxiety. How much you choose to tell your child will vary depending on the child’s age and maturity level. Many parents allow the level of information that they tell their child to grow with them as they get older. This is not a one-time talk, but instead, an ongoing conversation that evolves over time. Some studies suggest that until a child reaches age eight, they only need basic information such as the name of the disorder, the parts of the body that are affected, how it will be treated (if at all), and how their lives will be affected in the short-term.

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New Diagnosed with NF1 - A Guide to the Basics by Children's Tumor Foundation - Issuu