An International Online Survey on Oral Hygiene Issues in Patients with Epidermolysis Bullosa

Background: Inherited epidermolysis bullosa (EB) includes a group of rare genetic disorders affecting the skin and mucous membranes. These disorders are characterized by extreme fragility and blister formation after minimal or no trauma. Oral and systemic manifestations vary by subtype; the more severe forms often present with extensive intra-oral blistering, scarring, microstomia, vestibular obliteration, ankyloglossia, and-in some cases-oral cancer. This study aims to collect data on oral-health practices and challenges in people with EB to inform preventive strategies and dental care. Methods: An international, structured online questionnaire with 31 items was distributed to individuals with a confirmed diagnosis of EB. The survey explored clinical and oral manifestations, home-care routines (oral hygiene and diet), experiences with dental professionals, and the impact of oral health on quality of life. Results: Eighty-two questionnaires were completed. Dystrophic EB was the most often reported subtype (69.5%). Most respondents (67.1%) experienced recurrent oral blisters and/or erosions. Many reported relying exclusively on soft foods and struggling with mechanical plaque removal because of microstomia and pseudo-syndactyly. Severe oral pain hindered effective brushing in 17% of participants. Hand contractures and microstomia interfered with oral hygiene in 74% and 31% of participants, respectively. Nearly 30% sought dental care only when in pain. Among those who did not attend regular check-ups or hygiene sessions (44.6%), the most cited reason was that dental clinics were inadequately equipped or trained to manage EB. Conclusions: Because dental procedures carry significant risks for patients with EB, preventive care should begin in early childhood. Yet many patients are still insufficiently informed about essential preventive measures and lack access to dental professionals trained in EB management.