(012) Autoimmune Comorbidities and Familial Risk in Women With Vulvar Lichen Sclerosus: A Survey Study

Abstract Introduction Vulvar Lichen Sclerosus (VLS) is a chronic inflammatory disorder that affects the anogenital skin, leading to pruritus, pain, and sexual dysfunction. Additionally, patients with VLS face increased risk of vulvar malignancy, highlighting the importance of early detection and intervention. VLS is believed to be autoimmune in nature, but heritability patterns and association with autoimmune conditions require further study. Objective The aim of this survey study is to broaden our understanding of the occurrence of VLS and autoimmune conditions in patients with vulvar LS and their families, as well as barriers to determining familial history. Methods Participants with clinically diagnosed LS (with or without vulvar biopsy) were recruited from three urban vulvar pain clinics in the United States. Recruitment occurred via email, telephone, or during in-person clinic visits. Survey responses were collected between August 2025 and October 2025. Survey questions included information on personal and family history of LS and autoimmune conditions, including questions on accuracy and ease in gathering family history. Descriptive statistics were used to analyze survey responses. Results Among 54 participants with VLS, median age 53.39 ± 11.9 years, 25 (46.3%) were diagnosed with at least one autoimmune condition. The most common comorbidities reported among participants were psoriasis (n = 4, 7.41%), Hashimoto’s thyroiditis (n = 2, 3.7%), Graves’ disease (n = 2, 3.7%), and vitiligo (n = 2, 3.7%). An additional 10 participants (18.5%) were diagnosed with unspecified “other” autoimmune conditions (Table 1). Nine participants (16.67%) reported a biological female relative with a diagnosis of VLS (5 mother, 2 daughter, 2 sister, 1 aunt). An additional nine participants (16.67%) reported female relatives who experienced chronic vulvar symptoms consistent with VLS but with no formal diagnosis. Sixteen participants (29.6%) were unsure if they had a biological female relative with a diagnosis of LS. Thirty participants (55.56%) had never discussed vulvar symptoms or LS with their female relatives. The most common reasons for not discussing symptoms were “I never thought to ask” (n = 17, 31.48%) and “I think they would feel uncomfortable” (n = 12, 22.22%). If LS was discussed with female relatives, 18 (32.73%) received a neutral reaction, 9 (16.67%) received a positive reaction, and 1 (1.82%) received a negative reaction. No patients reported a biological male relative diagnosed with LS, although 16 (29.63%) were unsure. Thirty participants (55.56%) had a blood relative diagnosed with at least one autoimmune condition. The familial autoimmune conditions most reported were psoriasis (n = 10, 18.52%), rheumatoid arthritis (n = 9, 16.67%), Hashimoto’s thyroiditis (n = 5, 9.26%), and Crohn’s disease (n = 5, 9.26) (Table 2). Thirty-three participants (61.11%) were previously aware of a potential genetic component of LS. Conclusions The findings suggest the potential for a relatively small shared familial risk for LS among female blood relatives. Approximately 50% of patients with LS had at least one autoimmune condition and/or had family members with an autoimmune condition. This study highlights the challenges in gathering an accurate family medical history due to limited discussion surrounding vulvar symptoms within families. Disclosure No.