Epidermolysis bullosa (EB) describes a spectrum of disease from occasional bullae and callus formation to a debilitating life-threatening condition. In this study, we report the use of intravenous ketamine given orally to an infant with a phenotypically severe form of EB simplex, Dowling-Meara subtype, to achieve analgesia during painful dressing changes.
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Development and validation of the Iranian Minimum Data Set for Epidermolysis Bullosa: A mixed method approach.
PLoS One
January 2025
Assistant Professor of Health Information Management, Department of Health Information Technology, Ferdows Faculty of Medical Sciences, Birjand University of Medical Sciences, Birjand, Iran.
Minimum Data Set (MDS) enables integration in data collection, uniform data reporting, and data exchange across clinical and research information systems. The current study was conducted to determine a comprehensive national MDS for the Epidermolysis Bullosa (EB) information management system in Iran. This cross-sectional descriptive study consists of three steps: systematic review, focus group discussion, and the Delphi technique.
View Article and Find Full Text PDFTreatment of refractory, inflammatory epidermolysis bullosa acquisita with a combination of dupilumab and systemic glucocorticoid.
J Dermatol
January 2025
Department of Dermatology, Huashan Hospital, Fudan University, Shanghai, China.
The physical, emotional, social, and functional dimensions of epidermolysis bullosa. An interview study on burdens and helpful aspects from a patients' perspective.
Orphanet J Rare Dis
January 2025
EB House Austria, Department of Dermatology and Allergology, University Hospital of the Paracelsus Medical University, Salzburg, Austria.
Article Synopsis
- Epidermolysis bullosa (EB) is a painful genetic skin condition causing blisters even from light touch, significantly impacting the quality of life of those affected.
- The study aims to analyze the psychosocial effects of living with EB and identify coping mechanisms through semi-structured interviews with individuals across three countries.
- Results reveal various physical, emotional, social, and functional challenges faced by people with EB, emphasizing the need for personalized emotional support and understanding of individual experiences.
Filsuvez (Birch Triterpenes) Topical Gel.
Skinmed
January 2025
Baylor Scott & White University Hospital, Dallas, TX.
Filsuvez (birch triterpenes) topical gel received approval in 2023 for the treatment of epidermolysis bullosa (EB) in pediatric patients (aged ≥6 months) and adults. It promotes wound healing by modulating inflammation, encouraging new tissue formation, and maintaining the skin barrier. In a randomized, double-blind, controlled, parallel-group, phase III trial (EASE, NCT03068780), 223 patients were randomly assigned to two groups: the first group received treatment with birch triterpenes topical gel (study gel, n = 109), and the second group received treatment with vehicle gel (n = 114).
View Article and Find Full Text PDFWhen care hurts: parents' experiences of caring for a child with epidermolysis bullosa.
Orphanet J Rare Dis
December 2024
Department of Medical Genetics, Telemark Hospital Trust, Skien, Norway.
Background: Epidermolysis bullosa (EB) comprises a group of genetically and clinically heterogeneous diseases characterized by skin fragility and blistering. EB is incurable, and treatment consists of preventing blisters in addition to painful and time consuming skin care, often performed by the parents, in addition to monitoring other symptoms in cases of severe EB.
Results: The purpose of this study was to explore parental experiences of caring for a child with EB.
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