PhD defence B. (Beth) Morrel

Brief summary of the doctoral thesis:

Lichen sclerosus (LS) is a chronic skin disease that effects both men and women of all ages with a predilection for the genital and perianal skin. It is estimated that vulvar  lichen sclerosus  (VLS) will affect up to 3% of women in their lifetime. Clinical manifestations of VLS include painful vulvar and perianal fissures, ecchymosis, atrophic and vulnerable skin. The skin has  a characteristic parchment like appearance, with loss of vulvar architecture and narrowing of the introitus. Common symptoms are intractable pruritus and a burning sensation, painful micturition and defecation as well as dyspareunia. Quality of life and sexual well-being are effected by VLS. We speak of juvenile vulvar lichen sclerosus (JVLS) when VLS occurs in a child or adolescent up to the age of 18 years. JVLS occurs in at least 1 in every 900 girls. Complaints due to JVLS may cause behavioral changes of the child, and together with the physical findings may even mistakenly lead to suspicion of sexual abuse. We aimed to study the long-term sequelae of and experience with JVLS, ultimately to help patients and physicians regarding (long-term) support and follow-up  once JVLS is diagnosed.
Through the Dutch Nationwide Pathology Databank (PALGA) we sought adult women in the Netherlands who had been diagnosed with VLS in childhood or adolescence. Firstly, the histopathology of JVLS was systematically studied. Then an online survey was carried out with the women who were recruited through PALGA. Finally, both a clinical-observational study and a qualitative study were performed.