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Epidermolysis bullosa (EB) is a heterogenous group of genodermatoses characterized by the formation of blisters and erosions on skin and mucous membrans from birth on. The cause are mutations in the genes of structural proteins of the junction between epidermis and dermis. This book deals with the treatment of this skin disease itself and its many extracutaneous complications. There is no previous book which has been focused on the therapy and it will be based on evidence-based data derived from the world ́s largest cohort of inherited EB-patients, the American EB Registry. An important chapter will discuss gene therapy in hereditary EB which has been recently successfully performed within a localized skin site on a single EB patient as a proof-of-principle test. Given its unique collective contents, the monograph will provide the primary source for clinical informations of this oftentimes severe multiorgan disease.
Epidermolysis bullosa (EB) is a heterogenous group of genodermatoses characterized by the formation of blisters and erosions on skin and mucous membrans from birth on. The cause are mutations in the genes of structural proteins of the junction between epidermis and dermis. This book deals with the treatment of this skin disease itself and its many extracutaneous complications. There is no previous book which has been focused on the therapy and it will be based on evidence-based data derived from the world ́s largest cohort of inherited EB-patients, the American EB Registry. An important chapter will discuss gene therapy in hereditary EB which has been recently successfully performed within a localized skin site on a single EB patient as a proof-of-principle test. Given its unique collective contents, the monograph will provide the primary source for clinical informations of this oftentimes severe multiorgan disease.
Epidermolysis bullosa (EB) is the collective term for a heterogenous group of genetic skin disorders characterised by the formation of blisters and erosions on skin and mucous membranes. This book deals with early childhood motor and perceptual development, a particular challenge for children with extremely fragile skin. Going into functional treatment, it addresses rehabilitation of hands and feet in EB patients with fusions or contractures. The authors are occupational therapists with long-term experience in the management of EB patients. In an extraordinary holistic approach, they present a combination of paediatric and functional areas of treatment. Occupational therapy tools and interventions can help alleviate a number of accompanying complications and symptoms of EB, enhance self-care, and improve quality of life in general. Due to its practical approach, this book not only serves as a unique guide for doctors and health care professionals but is also comprehensible and useful for patients.
This book is a comprehensive compendium of current knowledge on inherited and autoimmune blistering diseases that relates advances in our understanding of the pathogenetic mechanisms to management of the individual diseases. The aim is to provide a detailed reference for dermatologists who care for patients with these conditions and a useful “one-stop information shop” for specialists outside of dermatology. The book opens by describing the structure and biology of the epidermis and basement membrane zone and discussing the genes and proteins that are targets for mutations and autoantibodies. The role of the various diagnostic tests is explained, and clinical manifestations of the specific diseases are presented with the aid of many high-quality illustrations. The forms of treatment appropriate in specific conditions are then described in depth, with coverage of dressings, drugs, surgical procedures, gene therapy, and other novel approaches. Helpful algorithms are included both for testing and monitoring and for treatment.
Butterfly Child is the story of a mother's journey through grief and incredible challenges. From the stillbirth at full term of her first baby, followed by a miscarriage, to the birth of her son Nicky, diagnosed with Recessive Dystrophic Epidermolysis Bullosa, a rare skin blistering disorder that requires extensive wound care and is considered life threatening. Challenges include Insurance Companies refusal to cover the most basic needs for any EB patient to Silvia's trying to make sense of her situation, from a divorce to a remarriage and another scary pregnancy. Her youngest son, Connor, is 100% healthy and she never, ever, takes it for granted."
Jonny Kennedy was the star of the Emmy-award winning documentary The Boy Whose Skin Fell Off. This is his moving, honest and uplifting story.
​​​Each dermatologist that was board certified after 1992 is required by the American Board of Dermatology to take a recertification exam every ten years. One of the major components of the exam is to be able to identify clinical photographs of approximately 200 skin diseases, and while there are other components to the test, they vary according to subspecialty. However, everyone is required to identify the images, so several months before the exam, the American Board of Dermatology releases a list of the skin diseases that will be tested, but does not provide the images or reveal which ones will appear. Review of Clinical Conditions for the Dermatology Recertification Examination provides a thorough, concise review of clinical images of the specific conditions that the reader will be required to recognize during the American Board of Dermatology recertification test. In addition, concise key clinical features for each image will be provided that will assist the reader in recognizing the clinical images on the examination, enabling them a more efficient way to study for the test without having to look up images online or in a large text book. Written by a board certified dermatologic surgeon who recently took the recertification exam, this book proves indispensable to dermatologists taking the exam or residents who want a quick reference of the clinical appearances of the main conditions generally encountered by a dermatologist.​ ​​
This book includes 40 peer-reviewed short papers submitted to the Scientific Conference titled Statistics and Information Systems for Policy Evaluation, aimed at promoting new statistical methods and applications for the evaluation of policies and organized by the Association for Applied Statistics (ASA) and the Dept. of Statistics, Computer Science, Applications DiSIA “G. Parenti” of the University of Florence, jointly with the partners AICQ (Italian Association for Quality Culture), AICQ-CN (Italian Association for Quality Culture North and Centre of Italy), AISS (Italian Academy for Six Sigma), ASSIRM (Italian Association for Marketing, Social and Opinion Research), Comune di Firenze, the SIS – Italian Statistical Society, Regione Toscana and Valmon – Evaluation & Monitoring.
Today we are on the brink of a much-needed transformative moment for health care. The U.S. health care system is designed to be reactive instead of preventive. The result is diagnoses that are too late and outcomes that are far worse than our level of spending should deliver. In recent years, U.S. life expectancy has been declining. Fundamental to realizing better health, and a more effective health care system, is advancing the disruptive thinking that has spawned innovation in Silicon Valley and throughout the world. That's exactly what Stanford Medicine has done by proposing a new vision for health and health care. In Discovering Precision Health, Lloyd Minor and Matthew Rees describe a holistic approach that will set health care on the right track: keep people healthy by preventing disease before it starts and personalize the treatment of individuals precisely, based on their specific profile. With descriptions of the pioneering work undertaken at Stanford Medicine, complemented by fascinating case studies of innovations from entities including the Chan Zuckerberg Biohub, GRAIL, and Impossible Foods, Minor and Rees present a dynamic vision for the future of individual health and health care. Youll see how tools from smartphone technology to genome sequencing to routine blood tests are helping avert illness and promote health. And you'll learn about the promising progress already underway in bringing greater precision to the process of predicting, preventing, and treating a range of conditions, including allergies, mental illness, preterm birth, cancer, stroke, and autism. The book highlights how biomedical advances are dramatically improving our ability to treat and cure complex diseases, while emphasizing the need to devote more attention to social, behavioral, and environmental factors that are often the primary determinants of health. The authors explore thought-provoking topics including: The unlikely role of Google Glass in treating autism How gene editing can advance precision in treating disease What medicine can learn from aviation liHow digital tools can contribute to health and innovation Discovering Precision Health showcases entirely new ways of thinking about health and health care and can help empower us to lead healthier lives.
A lavishly illustrated guide to almost 200 inherited diseases of the skin, hair, and nails. Each entry includes synonyms, age of onset, clinical findings, complications, course, laboratory findings, diagnosis, therapy, and key references, adding up to far more than just a collection of photographs. In addition to being a clinical primer, this is also a work of scientific research and contains the first printed description of two new syndromes. The fast-moving world of genetic research means that the latest genetic correlations, included here, render previous texts out of date. All specialists in Dermatology and Pediatrics should find this an invaluable front-line resource in the clinic.