Epidermolysis bullosa
Introduction
Epidermolysis bullosa refers to a group of genetic skin disorders that are highly heterogeneous in their symptoms and severity. In general, they are characterized by extreme fragility of the skin and the continuous creation of blisters and wounds. Wounds can also appear on the mucous membranes of the mouth, nose, eyes, etc. In many cases these wounds can be chronic and greatly affect the quality of life of the patients.
Summary
This book will address several aspects of the disease, including the different subtypes, associated mutations, the type of inheritance, skin problems, affected body systems, psychosocial issues or wound management, itching and pain. This material has been elaborated together with the Epidermolysis Bullosa Unit of Sant Joan de Déu Barcelona Children's Hospital (led by Dr. Asunción Vicente) and DEBRA Spain.
- Genetics, incidence, classification and diagnosis of EB
- EB at birth and early childhood
- Living with EB
- EB as a multisystemic disease
- Pain management in EB
- Management of itchy skin in EB
- Skin and wound care in EB
- EB research and clinical trials
- Key professionals in the field of epidermolysis at a national and international level
- National and international reference entities
- Informative resources about EB fo patients and professionals
- Results of the study about epidermolysis bullosa (Rare Commons)