DISCUSSING THE DIAGNOSIS OF NF1
Telling Others Sometimes, family members struggle with what to say to others about neurofibromatosis type 1 (NF1). This may be because they do not know where to start or how much to say. They may also be worried that they or their child may be treated differently when an NF1 diagnosis is revealed. Although everyone has his or her own ideas and comfort level for sharing personal information, there are some things to consider that may help make the process easier. Involving the child in the conversations and decision-making process about whom to tell and what to say may be helpful, as well as an empowering and valuable experience for the child.
Whom to Tell Often, the diagnosis is shared primarily with family members and close friends. Because NF1 may affect school performance, sharing the diagnosis with teachers, counselors, and the school nurse may be necessary and can help ensure that the child receives any extra support and services they may require. For older children and adults, it may be helpful to tell their employer, especially if there may be absences from work for doctor appointments or other NF1-related health concerns. In other instances, it is not uncommon for the diagnosis of NF to come up, especially if an individual has visible signs of NF1 on the outside of the body, learning difficulties, or behavioral problems that are noticeable to others.
18
