Talking to Others About NF1

How do I tell others what NF1 is? 

When meeting a new person, it can be difficult to explain to what NF is and the physical and emotional impact it may have on a person. Here are some sample statements or conversation starters that may be helpful when talking to others about NF1. 

“It is called Neurofibromatosis Type 1, or NF1, and is a genetic condition where lumps can grow along the nerves in the body. Most commonly, people can have bumps on or under their skin. These lumps are technically tumors but are usually not cancer-causing and slow-growing.” 

“Each person with NF1 can have very different features. Some people may only have a few bumps on the skin or freckling, while others may have many bumps, large growths below the skin, or other differences in their bones.” 

“Most people with NF1 lead very typical lives, but the emotional impact of NF1 can be significant. Some people can be self-conscious about their appearance or may be concerned about the possibility of passing NF1 to their children.”