Neurofibromatosis type 1 - social aspects of functioning and public attitude

The neurofibromatosis type 1 (NF-1) is the most common phacomatosis. Its clinical picture is variable and the course of the disease is progressive.

The aim of this paper is to present social aspects of living with neurofibromatosis type 1.

We examined 17 patients with NF-1 in the age between 22 to 61 years. In the group there were 11 women and 6 men. A special questionnaire was prepared for the study; it included questions concerning learning problems, difficulties in finding job, problems with getting into relationships and social reaction to NF-1.

More than 20% of patients had learning problems and worse marks than other students. Most of respondents did not have problems with making social relationships and difficulties in finding job. However more than 70% of patients thinks that they are different and they were harmed by the nature. Almost 1/3 of respondents do not recognize themselves as good life partner.

Neurofibromatosis type 1 decreases the self-confidence and self-esteem in patients with NF-1. The knowledge of this disease and its character is still poor in social audience. The patients' awareness of disease inheritance is high and their will to have children is small.