Neurofibromatosis type 1 - social aspects of functioning and public attitude.

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

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

MATERIALS AND

METHODS

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.

RESULTS

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.

CONCLUSIONS

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.