Juvenile Lichen Sclerosus

Project summary

There is no scientific literature on the long term effects of VLS diagnosed in childhood. Therefore we cannot validly counsel these girls, their parents and physicians on questions such as the expected course of the disease, sexuality, pregnancy and delivery, nor about the possible risk of vulvar cancer.

The aim of this project is to identify and question girls and women who had developed VLS in childhood or adolescence about the sequelae of the disease, and to continue to follow them  with the aim to gain insight into the long term consequences of the disease. This will support clinicians and patients with regard to diagnosis, counseling and treatment. Our research team closely collaborates with the patient special interest group of the Netherlands, the Stichting Lichen Sclerosus.

The information from the questionnaires and interviews will give insight into whether and, if so, how juvenile VLS affects the adult women, and what possible health risks there may be for these girls in adulthood. This project is a unique opportunity for the Netherlands, something that worldwide has not yet been done.