Health Challenges in Patients with Epidermolysis bullosa: a cross-sectional study

Purpose Epidermolysis bullosa (EB) is a rare genetic disorder affecting connective tissue that causes painful ulcerations and oral disorders. In our study, we aimed to characterize the general and oral health of patients with EB, develop a profile of such patients, and establish prevention and treatment strategies to improve their oral health. Methods In a cross-sectional study conducted participants underwent anamnesis, an oral clinical evaluation, and an oral health orientation. Fisher’s test was used to assess associations between clinical variables and oral diseases observed. Results Twelve patients with EB were examined; 58% were female, and their mean age was 22 years. Anamnesis revealed that 67% of patients were taking medication, 92% were under medical care, 50% had prior hospitalizations, 58% had anemia, and 42% had undergone surgery. Psychological assessments showed that 58% of patients had experienced anxiety, 58% reported good self-esteem, and 31% received psychological counseling. Intraoral exams identified oral mucosal lesions in 58% of patients and carious lesions in 42%. Pain was significantly associated with mucosal lesions ( p  = .024), and photobiomodulation therapy using a low-level laser was performed to treat oral mucosal lesions. All patients presented better after completing the therapy. Conclusion The diverse health needs of patients with EB emphasize the importance of individualized care and interventions, including photobiomodulation therapy, to alleviate pain and promote healing.