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

Health Challenges in Patients with Epidermolysis bullosa: a cross-sectional study | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Health Challenges in Patients with Epidermolysis bullosa: a cross-sectional study Mariana Silveira Souza, Laura Cascão Lopes, Luiza Grossmann de Almeida, and 4 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-5860279/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 17 Jun, 2025 Read the published version in Lasers in Medical Science → Version 1 posted 9 You are reading this latest preprint version Abstract 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. epidermolysis bullosa photobiomodulation therapy oral manifestation oral health Figures Figure 1 Introduction Epidermolysis bullosa (EB) is a rare genetic connective tissue disorder that leads to structural and biochemical alterations in keratin, hemidesmosomes, anchoring fibrils, and collagenase in the skin. Those changes impair the proper attachment of the epidermis to the dermis, which results in microscopic clefts that cause the separation of those layers following even minimal trauma. Consequently, patients develop deep, blistering or vesicular lesions across the skin and mucosa of the body, which rupture and lead to painful ulcerations with persistent difficulty in healing. Owing to the condition, many patients require full-body dressings to prevent secondary infections [1–3]. Based on its severity, EB can be subdivided into simplex, dystrophic, junctional, Kindler, and acquired forms. The simplex form, considered to be the mildest, involves skin blisters that often heal without significant scarring and rarely involves the oral mucosa. In the dystrophic form, blisters and ulcers affect the oral cavity and the gastrointestinal system. The junctional type—the most severe—is characterized by difficulties in nutrient absorption due to lesions in the intestines that can lead to anemia, stunted growth, and even death. The Kindler subtype, by contrast, is marked by blister formation, photosensitivity, and mucosal stenosis. Last, exceptional for not having a genetic origin, acquired EB develops in adulthood and is often associated with autoimmune processes [1, 4, 5]. In the oral cavity, EB can cause ulcerated lesions in structures such as the tongue, buccal mucosa, palate, floor of the mouth, and gingiva. Such lesions result in painful symptoms and continuous healing processes that lead to microstomia and ankyloglossia, which can cause difficulties in eating and maintaining oral hygiene. Due to limited access and the fragility of tissues, conventional dental treatment, ranging from prophylaxis to surgical procedures, poses challenges for such patients, for tissue manipulation often results in injuries throughout the oral mucosa. Nonetheless, maintaining oral health is crucial for patients with EB and significantly contributes to their quality of life [6, 7, 8]. With a deep understanding of the clinical and systemic characteristics of patients with EB, dentists can provide appropriate dental care by following approaches such as using lubricants and applying low-level laser therapy (LLLT) to reduce mucosal lesions associated with dental treatment. Prescribing less abrasive toothpaste and recommending suitable toothbrushes can improve oral hygiene and thereby prevent carious lesions and periodontal diseases. Moreover, preserving healthy teeth in the oral cavity and providing dietary guidance tailored to those patients can contribute to effective mastication, which has systemic implications for proper nutrient absorption [7, 9]. LLLT is a highly effective resource for managing wound healing and pain in oral mucosal lesions. Via its biostimulation mechanism, LLLT initiates photochemical reactions at the cellular level, which promotes tissue repair and pain relief. For individuals suffering from chronic ulcer-related pain, including patients with EB, LLLT represents a therapeutic option that can significantly improve quality of life [10, 11]. Given the multifaceted needs of patients with EB, the importance of multidisciplinary care becomes evident as a means to ensure timely, effective treatment with the active involvement of dental professionals. Recognizing the full spectrum of EB’s oral manifestations is essential for delivering resolutive dental care [12]. Therefore, 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 Our cross-sectional study, conducted in the Department of Dentistry, was approved by the institution’s ethics committee (Approval No. 4.096.266), and all participating patients signed the informed consent form. Patients with EB from the state of Minas Gerais were invited to participate via NGOs dedicated to supporting such individuals. All participants attended a group orientation session about oral health that also answered their questions and provided clarity on the topic. Next, the patients received a detailed anamnesis, including personal and current disease history, to identify prior hospitalizations and surgeries due to EB, any history of anemia, and their current use of medication. They were also subjected to extraoral and intraoral physical examinations, with the intraoral examination conducted following the standardized sequence established by the World Health Organization (1977). During the initial consultation, patients presenting with mucosal lesions (e.g., blisters, vesicles, or ulcers) underwent photobiomodulation therapy using a low-level laser (MMOptics, 100 mW). Infrared light was applied at 2 joules (J)/cm 2 at a central point on ulcerated lesions, and red light was applied at 1 J/cm 2 at the center of vesicular and blister lesions, along with four peripheral points around all lesions. All tissue alterations identified were recorded, and patients were referred to specialty clinics at the university. They remained under follow-up in the stomatology clinic for additional photobiomodulation sessions as needed. All collected data were stored and tabulated in a database using Excel® and statistically analyzed using EPINFO 7.0. Fisher’s exact test was applied to assess potential associations between sex, medication use, anemia, and prior hospitalizations with the presence of oral mucosal lesions in patients with EB. Results A total of 12 patients with EB were evaluated, 7 of whom (58%) were female while 5 (42%) were male. By age, patients ranged from 7 months to 60 years, with an average age of 22 years, and the largest group of patients was in their first decade of life (33%). During anamnesis, 8 patients (67%) reported using some type of medication, 11 (92%) reported being under medical care for lesions caused by EB, 6 (50%) reported prior hospitalizations due to complications from EB, 7 (58%) were diagnosed with chronic anemia, and 5 (42%) had undergone surgeries related to the disease (Fig. 1a). Along other lines, 7 patients (58%) reported experiencing anxiety, 7 (58%) reported good self-esteem, and 5 (42%) were unsure how to respond to the question regarding anxiety. Four patients (31%) reported that they were undergoing regular psychological counseling. Regarding EB subtype, 9 patients (75%)—the majority—were unsure of their specific subtype, whereas one patient (8.33%) reported a family history of EB, and another (8.33%) reported having had carcinoma in a lower limb due to complications from EB lesions. Figure 1a : Data collected during anamnesis (vertical axis: number of patients, horizontal axis: personal general health history). b : Data of intraoral examination conducted (vertical axis: number of patients, horizontal axis: intraoral alterations observed) – Graphs were made using GraphPad Prism 10. Intraoral examination revealed that 7 patients (58%) had ulcerated, vesicular, or blistering lesions in the mucosa, while 5 (42%) had carious lesions. Moreover, 4 patients (33%) required endodontic treatment, 2 (17%) exhibited signs of gingivitis, and another 2 (17%) presented with gingival calculus. Occlusal alterations were identified in 2 patients (17%), tooth loss was found in another 2 (17%), and 1 patient (8%) required dental prosthetics (Fig. 1b). Those findings provide a comprehensive overview of the oral conditions observed in the patients evaluated. All patients remained under follow-up in the stomatology clinic for additional photobiomodulation sessions as needed, and following therapy, all patients presented an overall reduction in pain. Table 1 – Association between oral lesion and different variables in patients with EB Variables Oral lesions p value * Present n (%) Absent n (%) Sex 0,65 Female 4 (36,36) 2 (18,18) Male 3 (27,27) 2 (18,18) Medication 0,53 Yes 4 (36,36) 3 (27,27) No 3 (27,27) 1 (9,09) Anemia 0,58 Yes 5 (55,55) 2 (22,22) No 1 (11,11) 1 (11,11) Hospitalization 0,19 Yes 5 (45,45) 1 (9,09) No 2 (18,18) 3 (27,27) Pain 0,024 Yes 7 (63,63) 1 (9,09) No 0 3 (27,27) n Absolute frequency; % Relative frequency; *Fisher Exact Test Last, a statistically significant association surfaced between pain and mucosal lesions ( p = .024). However, no other statistically significant associations were observed between the presence of mucosal lesions and sex, use of medication, anemia, or prior hospitalizations (Table 1 ). Discussion Patients with EB exhibit significant general and oral health needs, with intraoral lesions ranking among the most common demands. Our survey confirmed findings in the literature showing that oral mucosal lesions (58%) were the most prevalent need [13–15]. Moreover, our results underscore how oral health impacts general health, specifically in nutritional aspects, in patients with EB. Of the 12 patients evaluated, only 2 (17%) reported that it was their first consultation with a dentist, thereby indicating that despite access to dental services, treatment is not effectively provided, which may be associated with dentists’ lack of knowledge about EB’s characteristics and patient management. Patients with EB often experience alveolar arch atresia and delayed tooth eruption, which can lead to malocclusion and the need for orthodontic care. Tooth loss and the resulting need for prosthetic rehabilitation present challenges, for conventional removable prostheses frequently cause blister formation due to friction against the mucosa. Beyond that, multiple oral mucosal lesions, obliteration of the vestibular fold, ankyloglossia, and microstomia complicate oral hygiene; periodontal disease and caries often result, both of which can progress into partial or total edentulism. Those findings stress the importance of oral care for patients with EB and encourage the development of preventive and health-promoting techniques to minimize the need for rehabilitative treatment [2, 6, 15, 16]. Using photobiomodulation therapy with a low-level laser can bring about the remission of oral mucosal lesions and improve such patients’ quality of life. We also discovered a statistically significant association between pain and mucosal lesions ( p = .024). Such lesions should be treated to improve patients’ quality of life and provide more effective dental care, primarily using non-pharmacological approaches. Treatment should target the lesions, their complications and clinical manifestations, with a multidisciplinary approach being the most effective. Because manipulating oral tissues in those patients can induce new lesions [7, 17] photobiomodulation therapy with low-level laser, used in all patients in our study, can be an effective complementary, non-pharmacological therapy that facilitates lesion healing, reduces the frequency of new lesions, and alleviates pain. In general, dentists face significant challenges in caring for patients with EB due to insufficient knowledge about the disease, which leads to uncertainty and hesitation in planning and executing procedures. Therefore, it is crucial for oral health professionals to recognize the primary oral lesions and dental needs of such patients in order to address the limitations of treatment and promote interventions that reduce pain from oral mucosal lesions [16, 18]. For that reason, we suggest photobiomodulation therapy with a low-level laser as a protocol for all patients with EB, specifically before and after each session of dentistry treatment, as a critical factor in improving the quality of life of those individuals. Declarations Ethical approval: All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. The study was approved by the institutional ethical research committee (Approval No. 4.096.266). Funding: No funding was received for conducting this study. Author Contribution All authors contributed to the study conception and design. M.D.G.M supervised data collection, manuscript preparation, and approved the final version for publication; S.M.C.G and R.B.A elaborate the search conception, supervised the data collection, manuscript preparation, and approved the final version for publication; M.T.C.D conducted the data collection; M.S.S, L.C.L, L.G.A , M.T.C.D manuscript preparation, and approved the final version of the manuscript. References Bardhan A, Bruckner-Tuderman L, Chapple ILC, Harper JDFN, Has C, Magin T M, Marinkovich MP, Marshall JF, McGrath JA, Mellerio JE, Polson R, Heagerty AH (2020) Epidermolysis bullosa. Nat Rev Dis Primers 6:27. https://doi.org/10.1038/s41572-020-0210-0 Angelo MMFC, França DCC, Lago DBR, Volpato LER (2012) Clinical manifestations of epidermolysis bullosa: a literature review. Pesqu Bras Odontoped Clin Integr 1:135-142. 10.4034/PBOCI.2012.121.21 Barbosa GCT, Albertini JJ, Oliveira ZNP, Machado MCR, Assumpção IGR (2005) Epidermólise bolhosa distrófica e juncional: aspectos gastrointestinais. Pediatria (São Paulo) 27:87-94. Fine JD, Eady RAJ, Bauer EA, Bauer JW, Bruckner-Tuderman L, Heagerty A, Hintner H, Hovnanian A, Jonkman MF, Murrell DF, Shimizu H, Uitto J, Vahlquist A, Woodley D, Zambruno G (2008) The classification of inherited epidermolysis bullosa (EB): report of the third international consensus meeting on diagnosis and classification of EB. J. Am. Acad. Dermatol 58:931–950. doi:10.1016/j.jaad.2008.02.004 Fine JD, Bruckner-Tuderman L, Eady RAJ, Bauer EA, Bauer JW, Has C, Heagerty A, Hintner H, Hovnanian A, Jonkman MF, Leigh I, Marinkovich MP, Moss C, Murrell DF, Shimizu H, Uitto J, Woodley D, Zambruno G (2014). Inherited epidermolysis bullosa: updated recommendations on diagnosis and classification. J. Am. Acad. Dermatol. 70: 1103–1126. . http://dx.doi.org/10.1016/j.jaad.2014.01.903 Wright JT (2010) Oral manifestations in the epidermolysis bullosa spectrum. Dermatol. Clin. 28:159–164. doi:10.1016/j.det.2009.10.022 Krämer SM, Serrano MC, Zillmann G, Gálvez P, Araya I, Yanine N, Carrasco-Labra A, Oliva P, Brignardello-Petersen R, Villanueva J (2012) Oral health care for patients with epidermolysis bullosa – Best clinical practice guidelines. Int J Paediatr Dent 11:1-35. 10.1111/j.1365-263X.2012.01247.x Vidal G, Carrau F, Lizarraga M, Álvarez M (2018) Epidermólisis ampollar: a propósito de um caso clínico. Arch Pediatr Urug. 89:382-388. http://dx.doi.org/10.31134/AP.89.6.4 Krämer S, Lucas J, Gamboa F, Peñarrocha Diago M, Peñarrocha Oltra D, Guzmán-Letelier M, Paul S, Molina G, Sepúlveda L, Araya I, Soto R, Arriagada C, Lucky AW, Mellerio JE, Cornwall R, Alsayer F, Schilke R, Antal MA, Castrillón F, Paredes C, Serrano MC, Clark V (2020). Clinical practice guidelines: Oral health care for children and adults living with epidermolysis bullosa. Spec Care Dentist. 40:3-81. doi: 10.1111/scd.12511. Vieira ACM, Teixeira NS, Souza MS, Moura MDG, Rodrigues LV, Grossmann SMC (2023) Epidermólise bolhosa: relato de caso. Revista portuguesa de estomatologia e medicina dentária e cirurgia maxilofacial 64:133-138. http://doi.org/10.24873/j.rpemd.2023.09.1066 Albrektson M, Hedström L, Bergh H (2014) Recurrent aphthous stomatitis and pain management with low-level laser therapy: a randomized controlled trial. Oral Surg Oral Med Oral Pathol Oral Radiol 117: 590-594. http://dx.doi.org/10.1016/j.oooo.2014.01.228 Oliveira TM, Sakai VT, Candido LA, Silva SMB, Machado MAAM (2008) Clinical Management for Epidermolysis Bullosa Dystrophica. Journal of Applied Oral Science v:81-85. https://doi.org/10.1590/S1678-77572008000100016 Yavuz Y, An I, Yazmaci B, Akkus Z, Ortac H (2023) Evaluation of clinical and oral findings in patients with epidermolysis bullosa. Medicina 59:1185. https://doi.org/ 10.3390/medicina59071185 Feijoo JF, Bugallo J, Limeres J, Peñarrocha D, Peñarrocha M, Diz P (2011) Inherited epidermolysis bullosa: an update and suggested dental care considerations. J Am Dent Assoc 9:1017–1025 Polizzi A, Santonocito S, Patini R, Quinzi V, Stefano M, Leonardi R, Bianchi A, Isola G (2022) Oral Alterations In Heritable Epidermolysis Bullosa: A Clinical Study And Literature Review. Biomed Res Int 2022:1-8. https://doi.org/10.1155/2022/6493156 Smith Z, Nath S, Javanmard M, Salamon Y. (2024) The dental needs of children with Epidermolysis Bullosa and service delivery: a scoping review. BMC Oral Health. 24:1131. doi: 10.1186/s12903-024-04861-y. Fine JD, Johnson LB, Weiner M, Suchindran C (2004) Assessment of mobility, activities, and pain in different subtypes of epidermolysis bullosa. Clin Exp Dermatol 29:122–127. 10.1111/j.1365-2230.2004.01428.x Togo CCG, Zidorio APC, Gonçalves VSS, Hubbard L, Carvalho KMB, Dutra ES (2020) Quality of life in people with epidermolysis bullosa: a systematic review. Quality of life research 29:1731-1745. 10.1007/s11136-020-02495-5 Additional Declarations No competing interests reported. Cite Share Download PDF Status: Published Journal Publication published 17 Jun, 2025 Read the published version in Lasers in Medical Science → Version 1 posted Editorial decision: Revision requested 26 Feb, 2025 Reviews received at journal 21 Feb, 2025 Reviews received at journal 20 Feb, 2025 Reviewers agreed at journal 14 Feb, 2025 Reviewers agreed at journal 11 Feb, 2025 Reviewers invited by journal 08 Feb, 2025 Editor assigned by journal 08 Feb, 2025 Submission checks completed at journal 23 Jan, 2025 First submitted to journal 19 Jan, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-5860279","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":406208298,"identity":"1f355032-774d-411d-b93e-8fb9a9157bf7","order_by":0,"name":"Mariana Silveira Souza","email":"","orcid":"","institution":"Universidade Federal de Minas Gerais, Department of Oral Surgery and Pathology","correspondingAuthor":false,"prefix":"","firstName":"Mariana","middleName":"Silveira","lastName":"Souza","suffix":""},{"id":406208299,"identity":"2c33344c-09f0-4840-aea8-923ef3c9cc8d","order_by":1,"name":"Laura Cascão 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10.\u003c/p\u003e","description":"","filename":"Onlinefloatimage1.png","url":"https://assets-eu.researchsquare.com/files/rs-5860279/v1/1bf6bea84bfc8ac4bb013180.png"},{"id":85231406,"identity":"38c183aa-ad37-4a96-b6bc-eaf3e8d4c6d7","added_by":"auto","created_at":"2025-06-23 16:07:23","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":494110,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-5860279/v1/924de3a8-3266-4d98-9841-a209b9b97e8f.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Health Challenges in Patients with Epidermolysis bullosa: a cross-sectional study","fulltext":[{"header":"Introduction","content":"\u003cp\u003eEpidermolysis bullosa (EB) is a rare genetic connective tissue disorder that leads to structural and biochemical alterations in keratin, hemidesmosomes, anchoring fibrils, and collagenase in the skin. Those changes impair the proper attachment of the epidermis to the dermis, which results in microscopic clefts that cause the separation of those layers following even minimal trauma. Consequently, patients develop deep, blistering or vesicular lesions across the skin and mucosa of the body, which rupture and lead to painful ulcerations with persistent difficulty in healing. Owing to the condition, many patients require full-body dressings to prevent secondary infections [1\u0026ndash;3].\u003c/p\u003e \u003cp\u003eBased on its severity, EB can be subdivided into simplex, dystrophic, junctional, Kindler, and acquired forms. The simplex form, considered to be the mildest, involves skin blisters that often heal without significant scarring and rarely involves the oral mucosa. In the dystrophic form, blisters and ulcers affect the oral cavity and the gastrointestinal system. The junctional type\u0026mdash;the most severe\u0026mdash;is characterized by difficulties in nutrient absorption due to lesions in the intestines that can lead to anemia, stunted growth, and even death. The Kindler subtype, by contrast, is marked by blister formation, photosensitivity, and mucosal stenosis. Last, exceptional for not having a genetic origin, acquired EB develops in adulthood and is often associated with autoimmune processes [1, 4, 5].\u003c/p\u003e \u003cp\u003e In the oral cavity, EB can cause ulcerated lesions in structures such as the tongue, buccal mucosa, palate, floor of the mouth, and gingiva. Such lesions result in painful symptoms and continuous healing processes that lead to microstomia and ankyloglossia, which can cause difficulties in eating and maintaining oral hygiene. Due to limited access and the fragility of tissues, conventional dental treatment, ranging from prophylaxis to surgical procedures, poses challenges for such patients, for tissue manipulation often results in injuries throughout the oral mucosa. Nonetheless, maintaining oral health is crucial for patients with EB and significantly contributes to their quality of life [6, 7, 8].\u003c/p\u003e \u003cp\u003eWith a deep understanding of the clinical and systemic characteristics of patients with EB, dentists can provide appropriate dental care by following approaches such as using lubricants and applying low-level laser therapy (LLLT) to reduce mucosal lesions associated with dental treatment. Prescribing less abrasive toothpaste and recommending suitable toothbrushes can improve oral hygiene and thereby prevent carious lesions and periodontal diseases. Moreover, preserving healthy teeth in the oral cavity and providing dietary guidance tailored to those patients can contribute to effective mastication, which has systemic implications for proper nutrient absorption [7, 9]. LLLT is a highly effective resource for managing wound healing and pain in oral mucosal lesions. Via its biostimulation mechanism, LLLT initiates photochemical reactions at the cellular level, which promotes tissue repair and pain relief. For individuals suffering from chronic ulcer-related pain, including patients with EB, LLLT represents a therapeutic option that can significantly improve quality of life [10, 11].\u003c/p\u003e \u003cp\u003eGiven the multifaceted needs of patients with EB, the importance of multidisciplinary care becomes evident as a means to ensure timely, effective treatment with the active involvement of dental professionals. Recognizing the full spectrum of EB\u0026rsquo;s oral manifestations is essential for delivering resolutive dental care [12]. Therefore, 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.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eOur cross-sectional study, conducted in the Department of Dentistry, was approved by the institution’s ethics committee (Approval No. 4.096.266), and all participating patients signed the informed consent form.\u003c/p\u003e \u003cp\u003e Patients with EB from the state of Minas Gerais were invited to participate via NGOs dedicated to supporting such individuals. All participants attended a group orientation session about oral health that also answered their questions and provided clarity on the topic.\u003c/p\u003e \u003cp\u003eNext, the patients received a detailed anamnesis, including personal and current disease history, to identify prior hospitalizations and surgeries due to EB, any history of anemia, and their current use of medication. They were also subjected to extraoral and intraoral physical examinations, with the intraoral examination conducted following the standardized sequence established by the World Health Organization (1977).\u003c/p\u003e \u003cp\u003eDuring the initial consultation, patients presenting with mucosal lesions (e.g., blisters, vesicles, or ulcers) underwent photobiomodulation therapy using a low-level laser (MMOptics, 100 mW). Infrared light was applied at 2 joules (J)/cm\u003csup\u003e2\u003c/sup\u003e at a central point on ulcerated lesions, and red light was applied at 1 J/cm\u003csup\u003e2\u003c/sup\u003e at the center of vesicular and blister lesions, along with four peripheral points around all lesions. All tissue alterations identified were recorded, and patients were referred to specialty clinics at the university. They remained under follow-up in the stomatology clinic for additional photobiomodulation sessions as needed.\u003c/p\u003e \u003cp\u003eAll collected data were stored and tabulated in a database using Excel® and statistically analyzed using EPINFO 7.0. Fisher’s exact test was applied to assess potential associations between sex, medication use, anemia, and prior hospitalizations with the presence of oral mucosal lesions in patients with EB.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003e A total of 12 patients with EB were evaluated, 7 of whom (58%) were female while 5 (42%) were male. By age, patients ranged from 7 months to 60 years, with an average age of 22 years, and the largest group of patients was in their first decade of life (33%). During anamnesis, 8 patients (67%) reported using some type of medication, 11 (92%) reported being under medical care for lesions caused by EB, 6 (50%) reported prior hospitalizations due to complications from EB, 7 (58%) were diagnosed with chronic anemia, and 5 (42%) had undergone surgeries related to the disease (Fig.\u0026nbsp;1a). Along other lines, 7 patients (58%) reported experiencing anxiety, 7 (58%) reported good self-esteem, and 5 (42%) were unsure how to respond to the question regarding anxiety. Four patients (31%) reported that they were undergoing regular psychological counseling. Regarding EB subtype, 9 patients (75%)—the majority—were unsure of their specific subtype, whereas one patient (8.33%) reported a family history of EB, and another (8.33%) reported having had carcinoma in a lower limb due to complications from EB lesions.\u003c/p\u003e\u003cb\u003eFigure\u0026nbsp;1a\u003c/b\u003e: Data collected during anamnesis (vertical axis: number of patients, horizontal axis: personal general health history). \u003cb\u003eb\u003c/b\u003e: Data of intraoral examination conducted (vertical axis: number of patients, horizontal axis: intraoral alterations observed) – Graphs were made using GraphPad Prism 10.\u003c/p\u003e\u003cp\u003eIntraoral examination revealed that 7 patients (58%) had ulcerated, vesicular, or blistering lesions in the mucosa, while 5 (42%) had carious lesions. Moreover, 4 patients (33%) required endodontic treatment, 2 (17%) exhibited signs of gingivitis, and another 2 (17%) presented with gingival calculus. Occlusal alterations were identified in 2 patients (17%), tooth loss was found in another 2 (17%), and 1 patient (8%) required dental prosthetics (Fig.\u0026nbsp;1b). Those findings provide a comprehensive overview of the oral conditions observed in the patients evaluated. All patients remained under follow-up in the stomatology clinic for additional photobiomodulation sessions as needed, and following therapy, all patients presented an overall reduction in pain.\u003c/p\u003e\u003cdiv class=\"gridtable\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003e– Association between oral lesion and different variables in patients with EB\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e\u003ccolgroup cols=\"4\"\u003e\u003c/colgroup\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eVariables\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003eOral lesions\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003e\u003cem\u003ep\u003c/em\u003e value\u003cem\u003e*\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003ePresent\u003c/b\u003e\u003c/p\u003e \u003cp\u003en (%)\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cb\u003eAbsent\u003c/b\u003e\u003c/p\u003e \u003cp\u003en (%)\u003c/p\u003e \u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eSex\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\" morerows=\"2\" rowspan=\"3\"\u003e \u003cp\u003e0,65 \u003c/p\u003e \u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4 \u003c/p\u003e \u003cp\u003e(36,36)\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003cp\u003e (18,18)\u003c/p\u003e \u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3\u003c/p\u003e \u003cp\u003e (27,27)\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003cp\u003e (18,18)\u003c/p\u003e \u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eMedication\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\" morerows=\"2\" rowspan=\"3\"\u003e \u003cp\u003e0,53\u003c/p\u003e \u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4\u003c/p\u003e \u003cp\u003e (36,36)\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3 \u003c/p\u003e \u003cp\u003e(27,27)\u003c/p\u003e \u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3\u003c/p\u003e \u003cp\u003e (27,27)\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003cp\u003e (9,09)\u003c/p\u003e \u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eAnemia\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\" morerows=\"2\" rowspan=\"3\"\u003e \u003cp\u003e0,58 \u003c/p\u003e \u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5 \u003c/p\u003e \u003cp\u003e(55,55)\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003cp\u003e (22,22)\u003c/p\u003e \u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003cp\u003e (11,11)\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003cp\u003e (11,11)\u003c/p\u003e \u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eHospitalization\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\" morerows=\"2\" rowspan=\"3\"\u003e \u003cp\u003e0,19\u003c/p\u003e \u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5\u003c/p\u003e \u003cp\u003e (45,45)\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 \u003c/p\u003e \u003cp\u003e(9,09)\u003c/p\u003e \u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2\u003c/p\u003e \u003cp\u003e (18,18)\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3 \u003c/p\u003e \u003cp\u003e(27,27)\u003c/p\u003e \u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003ePain\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\" morerows=\"2\" rowspan=\"3\"\u003e \u003cp\u003e\u003cb\u003e0,024\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e7 \u003c/p\u003e \u003cp\u003e(63,63)\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003cp\u003e (9,09)\u003c/p\u003e \u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3\u003c/p\u003e \u003cp\u003e (27,27)\u003c/p\u003e \u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003ctfoot\u003e\u003ctr\u003e\u003ctd colspan=\"4\"\u003e\u003csup\u003en Absolute frequency; % Relative frequency; *Fisher Exact Test\u003c/sup\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tfoot\u003e\u003c/table\u003e\u003c/div\u003e\u003cp\u003eLast, a statistically significant association surfaced between pain and mucosal lesions (\u003cem\u003ep\u003c/em\u003e = .024). However, no other statistically significant associations were observed between the presence of mucosal lesions and sex, use of medication, anemia, or prior hospitalizations (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e).\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003ePatients with EB exhibit significant general and oral health needs, with intraoral lesions ranking among the most common demands. Our survey confirmed findings in the literature showing that oral mucosal lesions (58%) were the most prevalent need [13–15]. Moreover, our results underscore how oral health impacts general health, specifically in nutritional aspects, in patients with EB. Of the 12 patients evaluated, only 2 (17%) reported that it was their first consultation with a dentist, thereby indicating that despite access to dental services, treatment is not effectively provided, which may be associated with dentists’ lack of knowledge about EB’s characteristics and patient management.\u003c/p\u003e\u003cp\u003ePatients with EB often experience alveolar arch atresia and delayed tooth eruption, which can lead to malocclusion and the need for orthodontic care. Tooth loss and the resulting need for prosthetic rehabilitation present challenges, for conventional removable prostheses frequently cause blister formation due to friction against the mucosa. Beyond that, multiple oral mucosal lesions, obliteration of the vestibular fold, ankyloglossia, and microstomia complicate oral hygiene; periodontal disease and caries often result, both of which can progress into partial or total edentulism. Those findings stress the importance of oral care for patients with EB and encourage the development of preventive and health-promoting techniques to minimize the need for rehabilitative treatment [2, 6, 15, 16]. Using photobiomodulation therapy with a low-level laser can bring about the remission of oral mucosal lesions and improve such patients’ quality of life.\u003c/p\u003e\u003cp\u003eWe also discovered a statistically significant association between pain and mucosal lesions (\u003cem\u003ep\u003c/em\u003e = .024). Such lesions should be treated to improve patients’ quality of life and provide more effective dental care, primarily using non-pharmacological approaches. Treatment should target the lesions, their complications and clinical manifestations, with a multidisciplinary approach being the most effective. Because manipulating oral tissues in those patients can induce new lesions [7, 17] photobiomodulation therapy with low-level laser, used in all patients in our study, can be an effective complementary, non-pharmacological therapy that facilitates lesion healing, reduces the frequency of new lesions, and alleviates pain.\u003c/p\u003e\u003cp\u003eIn general, dentists face significant challenges in caring for patients with EB due to insufficient knowledge about the disease, which leads to uncertainty and hesitation in planning and executing procedures. Therefore, it is crucial for oral health professionals to recognize the primary oral lesions and dental needs of such patients in order to address the limitations of treatment and promote interventions that reduce pain from oral mucosal lesions [16, 18]. For that reason, we suggest photobiomodulation therapy with a low-level laser as a protocol for all patients with EB, specifically before and after each session of dentistry treatment, as a critical factor in improving the quality of life of those individuals.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e \u003cstrong\u003eEthical approval:\u003c/strong\u003e \u003cp\u003e All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. The study was approved by the institutional ethical research committee (Approval No. 4.096.266).\u003c/p\u003e \u003c/p\u003e\u003ch2\u003eFunding:\u003c/h2\u003e \u003cp\u003eNo funding was received for conducting this study.\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eAll authors contributed to the study conception and design. M.D.G.M supervised data collection, manuscript preparation, and approved the final version for publication; S.M.C.G and R.B.A elaborate the search conception, supervised the data collection, manuscript preparation, and approved the final version for publication; M.T.C.D conducted the data collection; M.S.S, L.C.L, L.G.A , M.T.C.D manuscript preparation, and approved the final version of the manuscript.\u003c/p\u003e"},{"header":"References","content":"\u003col start=\"1\" type=\"1\"\u003e\n\u003cli\u003eBardhan A, Bruckner-Tuderman L, Chapple ILC, Harper JDFN, Has C, Magin T M, Marinkovich MP, Marshall JF, McGrath JA, Mellerio JE, Polson R, Heagerty AH (2020) Epidermolysis bullosa. Nat Rev Dis Primers 6:27. https://doi.org/10.1038/s41572-020-0210-0\u003c/li\u003e\n\u003cli\u003eAngelo MMFC, Fran\u0026ccedil;a DCC, Lago DBR, Volpato LER (2012) Clinical manifestations of epidermolysis bullosa: a literature review. Pesqu Bras Odontoped Clin Integr 1:135-142. 10.4034/PBOCI.2012.121.21\u003c/li\u003e\n\u003cli\u003eBarbosa GCT, Albertini JJ, Oliveira ZNP, Machado MCR, Assump\u0026ccedil;\u0026atilde;o IGR (2005) Epiderm\u0026oacute;lise bolhosa distr\u0026oacute;fica e juncional: aspectos gastrointestinais. Pediatria (S\u0026atilde;o Paulo) 27:87-94. \u003c/li\u003e\n\u003cli\u003eFine JD, Eady RAJ, Bauer EA, Bauer JW, Bruckner-Tuderman L, Heagerty A, Hintner H, Hovnanian A, Jonkman MF, Murrell DF, Shimizu H, Uitto J, Vahlquist A, Woodley D, Zambruno G (2008) The classification of inherited epidermolysis bullosa (EB): report of the third international consensus meeting on diagnosis and classification of EB. J. Am. Acad. Dermatol 58:931\u0026ndash;950. doi:10.1016/j.jaad.2008.02.004\u003c/li\u003e\n\u003cli\u003eFine JD, Bruckner-Tuderman L, Eady RAJ, Bauer EA, Bauer JW, Has C, Heagerty A, Hintner H, Hovnanian A, Jonkman MF, Leigh I, Marinkovich MP, Moss C, Murrell DF, Shimizu H, Uitto J, Woodley D, Zambruno G (2014). Inherited epidermolysis bullosa: updated recommendations on diagnosis and classification. J. Am. Acad. Dermatol. 70: 1103\u0026ndash;1126. . http://dx.doi.org/10.1016/j.jaad.2014.01.903 \u003c/li\u003e\n\u003cli\u003eWright JT (2010) Oral manifestations in the epidermolysis bullosa spectrum. Dermatol. Clin. 28:159\u0026ndash;164. doi:10.1016/j.det.2009.10.022\u003c/li\u003e\n\u003cli\u003eKr\u0026auml;mer SM, Serrano MC, Zillmann G, G\u0026aacute;lvez P, Araya I, Yanine N, Carrasco-Labra A, Oliva P, Brignardello-Petersen R, Villanueva J (2012) Oral health care for patients with epidermolysis bullosa \u0026ndash; Best clinical practice guidelines. Int J Paediatr Dent 11:1-35. 10.1111/j.1365-263X.2012.01247.x\u003c/li\u003e\n\u003cli\u003eVidal G, Carrau F, Lizarraga M, \u0026Aacute;lvarez M (2018) Epiderm\u0026oacute;lisis ampollar: a prop\u0026oacute;sito de um caso cl\u0026iacute;nico. Arch Pediatr Urug. 89:382-388. http://dx.doi.org/10.31134/AP.89.6.4\u003c/li\u003e\n\u003cli\u003eKr\u0026auml;mer S, Lucas J, Gamboa F, Pe\u0026ntilde;arrocha Diago M, Pe\u0026ntilde;arrocha Oltra D, Guzm\u0026aacute;n-Letelier M, Paul S, Molina G, Sep\u0026uacute;lveda L, Araya I, Soto R, Arriagada C, Lucky AW, Mellerio JE, Cornwall R, Alsayer F, Schilke R, Antal MA, Castrill\u0026oacute;n F, Paredes C, Serrano MC, Clark V (2020). Clinical practice guidelines: Oral health care for children and adults living with epidermolysis bullosa. Spec Care Dentist. 40:3-81. doi: 10.1111/scd.12511. \u003c/li\u003e\n\u003cli\u003eVieira ACM, Teixeira NS, Souza MS, Moura MDG, Rodrigues LV, Grossmann SMC (2023) Epiderm\u0026oacute;lise bolhosa: relato de caso. Revista portuguesa de estomatologia e medicina dent\u0026aacute;ria e cirurgia maxilofacial 64:133-138. http://doi.org/10.24873/j.rpemd.2023.09.1066 \u003c/li\u003e\n\u003cli\u003eAlbrektson M, Hedstr\u0026ouml;m L, Bergh H (2014) Recurrent aphthous stomatitis and pain management with low-level laser therapy: a randomized controlled trial. Oral Surg Oral Med Oral Pathol Oral Radiol 117: 590-594. http://dx.doi.org/10.1016/j.oooo.2014.01.228\u003c/li\u003e\n\u003cli\u003eOliveira TM, Sakai VT, Candido LA, Silva SMB, Machado MAAM (2008) Clinical Management for Epidermolysis Bullosa Dystrophica. Journal of Applied Oral Science v:81-85. https://doi.org/10.1590/S1678-77572008000100016 \u003c/li\u003e\n\u003cli\u003eYavuz Y, An I, Yazmaci B, Akkus Z, Ortac H (2023) Evaluation of clinical and oral findings in patients with epidermolysis bullosa. Medicina 59:1185. https://doi.org/ 10.3390/medicina59071185\u003c/li\u003e\n\u003cli\u003eFeijoo JF, Bugallo J, Limeres J, Pe\u0026ntilde;arrocha D, Pe\u0026ntilde;arrocha M, Diz P (2011) Inherited epidermolysis bullosa: an update and suggested dental care considerations. J Am Dent Assoc 9:1017\u0026ndash;1025\u003c/li\u003e\n\u003cli\u003ePolizzi A, Santonocito S, Patini R, Quinzi V, Stefano M, Leonardi R, Bianchi A, Isola G (2022) Oral Alterations In Heritable Epidermolysis Bullosa: A Clinical Study And Literature Review. Biomed Res Int 2022:1-8. https://doi.org/10.1155/2022/6493156 \u003c/li\u003e\n\u003cli\u003eSmith Z, Nath S, Javanmard M, Salamon Y. (2024) The dental needs of children with Epidermolysis Bullosa and service delivery: a scoping review. BMC Oral Health. 24:1131. doi: 10.1186/s12903-024-04861-y.\u003c/li\u003e\n\u003cli\u003eFine JD, Johnson LB, Weiner M, Suchindran C (2004) Assessment of mobility, activities, and pain in different subtypes of epidermolysis bullosa. Clin Exp Dermatol 29:122\u0026ndash;127. 10.1111/j.1365-2230.2004.01428.x\u003c/li\u003e\n\u003cli\u003eTogo CCG, Zidorio APC, Gon\u0026ccedil;alves VSS, Hubbard L, Carvalho KMB, Dutra ES (2020) Quality of life in people with epidermolysis bullosa: a systematic review. Quality of life research 29:1731-1745. 10.1007/s11136-020-02495-5 \u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"lasers-in-medical-science","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"lims","sideBox":"Learn more about [Lasers in Medical Science](https://link.springer.com/journal/10103)","snPcode":"10103","submissionUrl":"https://submission.springernature.com/new-submission/10103/3","title":"Lasers in Medical Science","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"epidermolysis bullosa, photobiomodulation therapy, oral manifestation, oral health","lastPublishedDoi":"10.21203/rs.3.rs-5860279/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-5860279/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003ePurpose\u003c/h2\u003e \u003cp\u003eEpidermolysis 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.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003e In a cross-sectional study conducted participants underwent anamnesis, an oral clinical evaluation, and an oral health orientation. Fisher\u0026rsquo;s test was used to assess associations between clinical variables and oral diseases observed.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eTwelve 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 (\u003cem\u003ep\u003c/em\u003e\u0026thinsp;=\u0026thinsp;.024), and photobiomodulation therapy using a low-level laser was performed to treat oral mucosal lesions. All patients presented better after completing the therapy.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e \u003cp\u003eThe diverse health needs of patients with EB emphasize the importance of individualized care and interventions, including photobiomodulation therapy, to alleviate pain and promote healing.\u003c/p\u003e","manuscriptTitle":"Health Challenges in Patients with Epidermolysis bullosa: a cross-sectional study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-02-03 09:09:21","doi":"10.21203/rs.3.rs-5860279/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-02-26T18:48:03+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-02-21T13:36:54+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-02-20T16:46:24+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"151302999626279752406784492150097341793","date":"2025-02-14T15:18:46+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"197581111540040716873057689798332310902","date":"2025-02-11T08:43:53+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-02-08T18:55:50+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-02-08T18:54:52+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-01-23T14:20:23+00:00","index":"","fulltext":""},{"type":"submitted","content":"Lasers in Medical Science","date":"2025-01-19T15:23:52+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"lasers-in-medical-science","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"lims","sideBox":"Learn more about [Lasers in Medical Science](https://link.springer.com/journal/10103)","snPcode":"10103","submissionUrl":"https://submission.springernature.com/new-submission/10103/3","title":"Lasers in Medical Science","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"57ce5769-9856-42e9-9a3e-4a22a549494e","owner":[],"postedDate":"February 3rd, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2025-06-23T16:03:07+00:00","versionOfRecord":{"articleIdentity":"rs-5860279","link":"https://doi.org/10.1007/s10103-025-04533-5","journal":{"identity":"lasers-in-medical-science","isVorOnly":false,"title":"Lasers in Medical Science"},"publishedOn":"2025-06-17 15:57:11","publishedOnDateReadable":"June 17th, 2025"},"versionCreatedAt":"2025-02-03 09:09:21","video":"","vorDoi":"10.1007/s10103-025-04533-5","vorDoiUrl":"https://doi.org/10.1007/s10103-025-04533-5","workflowStages":[]},"version":"v1","identity":"rs-5860279","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-5860279","identity":"rs-5860279","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}