Due to the wide variability in the presentation of NF1, affected individuals may either have mild presentations or more severe presentations that are cosmetically disfiguring and are associated with stigma. The cosmetic appearance of NF1 may amount to an attack on one’s self-image. Moreover, the unpredictable nature of this disease can be a source of anxiety for both NF1 patients and their families. Patients may also have learning disabilities that can hinder their economic status and capacity to cope with the burden of the disease.
Patients should speak with their healthcare providers for support and medical advice.