Sexual Satisfaction and Sexual Functioning in Individuals with Neurofibromatosis Type 1 A Pilot Study

Neurofibromatosis Type 1 (NF1) is a chronic genetic disorder with characteristic visible features. It is known that diseases with visible features are associated with a lower perceived quality of life and an impact on the sexuality of the people affected. For the first time ever, sexual functioning and sexual satisfaction amongst patients with NF1 in Germany was examined in association with the severity of the disease. Data was collected with questionnaires at the neurofibromatosis outpatients unit at the University Medical Center Hamburg-Eppendorf. A total of 45 participants took part in the questionnaire-based study (56 % female; mean age: 39 years; 73 % living in a partnership). Overall, sexual functioning was unremarkable. The majority of the participants were satisfied with their sexual experiences (69 %). There was no association to be found between sexual satisfaction and the clinical and neurological severity of the neurofibromatosis that was statistically significant. Contrary to expectations no association could be found between the clinical and neurological severity of the neurofibromatosis and sexual satisfaction in this study.