Family history does not influence stress or major coping styles in adults with NF 1

Author: Mikaela Bradley, Ashley Cannon, Bryce Brown, Kelly Taylor, Paul Moots, Emily McQuillen

Published On: 09/11/25

Neurofibromatosis type 1 (NF1) is considered to be fully penetrant, meaning nearly everyone with the genetic mutation will exhibit some symptoms. However, there is considerable variability in the symptoms both within families and among individuals. Common features of NF1 include café-au-lait macules, freckling in the inguinal area, optic gliomas, Lisch nodules, neurofibromas, dysplasia of long bones, learning differences, malignant peripheral nerve sheath tumors (MPNSTs), and an increased risk of cancer.

Due to the wide range of symptoms and their varying severity, NF1 is associated with significant uncertainty. This uncertainty can impact various aspects of an individual’s life, such as health monitoring, family planning, and mental well-being. Research indicates that individuals with NF1 tend to experience higher levels of stress compared to the general population and other groups, as measured by the Perceived Stress Scale (PSS).

Evidence suggests that inheritance patterns, uncertainty, and family structure are important considerations when studying stress and coping mechanisms in adults with NF1. Family interactions can influence these factors positively or negatively for individuals with NF1. Overall, these studies demonstrate that family experiences may affect how individuals manage their NF1 diagnosis.

While existing literature examines stress and coping in the broader NF1 population, it remains unclear whether family history mediates these experiences in adults with NF1. This is a critical area of study, as approximately 50% of NF1 cases are inherited, while the other 50% are due to spontaneous mutations.

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