Introduction: Neurofibromatosis is a rare autosomal dominant genetic disease causing range of symptoms, especially skin lesions, and seriously affects the patients’ quality of life. The aim of this study was to describe the experiences of living with neurofibromatosis type 1 (NF1). Case Description: This qualitative case report examined the experiences of living with NF1 in a 25-year-old woman. The data were collected through interactive semi-structured interviews and analyzed by Van Manen phenomenological approach. Strategies to ensure the rigor of study were prolonged engagement, triangulation, and member checking. Results: Data analysis revealed two main issues, including "fear of the unknown", and "try to cope with". Hiding, dependent on my family, joining social networks, and hope for a cure were other important issues for this patient. Conclusion: Family and social support groups could help the patients in dealing with loneliness, fear and anxiety, and find herself in caring climate with mutual understanding and empathetic connection.