Life With Epidermolysis Bullosa Eb
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Life With Epidermolysis Bullosa Eb
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Author : Jo-David Fine
language : en
Publisher: Springer Science & Business Media
Release Date : 2009-04-02
Life With Epidermolysis Bullosa Eb written by Jo-David Fine and has been published by Springer Science & Business Media this book supported file pdf, txt, epub, kindle and other format this book has been release on 2009-04-02 with Medical categories.
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.
Life With Epidermolysis Bullosa Eb
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Author : Jo-David Fine
language : en
Publisher: Springer
Release Date : 2008-10-27
Life With Epidermolysis Bullosa Eb written by Jo-David Fine and has been published by Springer this book supported file pdf, txt, epub, kindle and other format this book has been release on 2008-10-27 with Medical categories.
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.
Living With Epidermolysis Bullosa
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Author : Silvia C.
language : en
Publisher: Lulu.com
Release Date : 2007-09-01
Living With Epidermolysis Bullosa written by Silvia C. and has been published by Lulu.com this book supported file pdf, txt, epub, kindle and other format this book has been release on 2007-09-01 with Biography & Autobiography categories.
Living with Epidermolysis Bullosa has first-hand accounts written by parents and patients who are living or have lived with EB, and was compiled to help people in general understand how it is like to truly live with every form of Epidermolysis Bullosa; from the milder Simplex variants, who are nonetheless not simple to live with, to the more lethal, namely Junctional, whose patients usually succumb to before their first birthday. The stories you will read are from proud parents, or patients and their struggles and how they are coping. Some stories are sad, some are encouraging, and everything in between.
Occupational Therapy In Epidermolysis Bullosa
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Author : Hedwig Weiß
language : en
Publisher: Springer Science & Business Media
Release Date : 2012-10-23
Occupational Therapy In Epidermolysis Bullosa written by Hedwig Weiß and has been published by Springer Science & Business Media this book supported file pdf, txt, epub, kindle and other format this book has been release on 2012-10-23 with Medical categories.
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.
Chapter Patient Generated Evidence In Epidermolysis Bullosa Eb Development Of A Questionnaire To Assess The Quality Of Life
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Author :
language : en
Publisher:
Release Date : 2021
Chapter Patient Generated Evidence In Epidermolysis Bullosa Eb Development Of A Questionnaire To Assess The Quality Of Life written by and has been published by this book supported file pdf, txt, epub, kindle and other format this book has been release on 2021 with categories.
Epidermolysis Bullosa (EB) is a group of genetic conditions that cause fragile and blistering skin. Although there are different types of EB, which differ in severity, their signs and symptoms overlap. As a result of this disorder, patients face an unbearable burden in their lives, and their Quality of Life (QoL) is negatively affected at every life cycle stage. Nevertheless, the assessment of the quality of life of these patients is scanty. This project aims to develop a patient-centered questionnaire to assess the QoL of EB patients. This tool will be a valid aid for clinicians to understand patients better and identify the areas that need more attention; moreover, it will allow them to follow the patients over time and evaluate the impact of any treatments. The methodological process to develop the questionnaire consisted of two phases: firstly, a critical review of scientific literature was performed; secondly, a pseudo-Delphi study was carried out. A multidisciplinary panel (including patients, caregivers, and clinicians) actively participated in round tables to discuss the main areas of interest. Starting from this initial set of areas and through the repetition of Delphi (up to three rounds), a gradual refinement of the statements was carried out to define a list of items to be included in an easy-to-use but meaningful questionnaire. The final patient-centered questionnaire is thus able to measure the QoL beyond the physical symptoms and the clinical evolution of the disease, encompassing functional autonomy, psycho-emotional state, social relations and the working field.
Absolute Dermatology Review
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Author : Hugh Morris Gloster, Jr.
language : en
Publisher: Springer
Release Date : 2015-05-28
Absolute Dermatology Review written by Hugh Morris Gloster, Jr. and has been published by Springer this book supported file pdf, txt, epub, kindle and other format this book has been release on 2015-05-28 with Medical categories.
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.
Jonny Kennedy
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Author : Roger Stutter
language : en
Publisher: Tonto Books
Release Date : 2007
Jonny Kennedy written by Roger Stutter and has been published by Tonto Books this book supported file pdf, txt, epub, kindle and other format this book has been release on 2007 with Epidermolysis bullosa categories.
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.
Blistering Diseases
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Author : Dédée F. Murrell
language : en
Publisher: Springer
Release Date : 2015-03-05
Blistering Diseases written by Dédée F. Murrell and has been published by Springer this book supported file pdf, txt, epub, kindle and other format this book has been release on 2015-03-05 with Medical categories.
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.
Epidermolysis Bullosa
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Author : Andrew N. Lin
language : en
Publisher: Springer Science & Business Media
Release Date : 2012-12-06
Epidermolysis Bullosa written by Andrew N. Lin and has been published by Springer Science & Business Media this book supported file pdf, txt, epub, kindle and other format this book has been release on 2012-12-06 with Medical categories.
Because skin blisters are the initial manifestation of epidermolysis bullosa (EB), patients invariably present to the dermatologist for diagnosis and treatment. However, EB is a systemic disease whose management requires input from clinicians in virtually all fields of medicine, including pediatri cians, surgeons, dentists, gastroenterologists, hematologists, otorhinolaryn gologists, dietitians, and physical therapists, to name a few. Because EB is a rare disease, few clinicians are familiar with it, and many recoil at the pros pect of caring for individuals covered with blisters caused by a disease they know little about. For patients, insult is thus added to injury and they feel abandoned, neglected, and frustrated. One way to remedy this deplorable situation is to provide clinicians with a compact source of information de tailing the principles of EB diagnosis and treatment. This text seeks to fulfill this role. From 1986-1991, The Rockefeller University Hospital has been the co ordinating center of the National EB Registry. Supported by The National Institutes of Health, this Registry consists of four university centers* commit ted to collecting clinical data concerning diagnosis, treatment, and epidemio logy on all American EB patients. As of April 1992, nearly 1,799 EB patients have enrolled nationwide. The Registry is now in its second five-year phase of operation.
Pain Care For Patients With Epidermolysis Bullosa Best Care Practice Guidelines
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Author : Aarhus Aarhus Press
language : en
Publisher:
Release Date : 2016-07-11
Pain Care For Patients With Epidermolysis Bullosa Best Care Practice Guidelines written by Aarhus Aarhus Press and has been published by this book supported file pdf, txt, epub, kindle and other format this book has been release on 2016-07-11 with categories.
Inherited epidermolysis bullosa (EB) comprises a group of rare disorders that have multi-system effects and patients present with a number of both acute and chronic pain care needs. Effects on quality of life are substantial. Pain and itching are burdensome daily problems. Experience with, and knowledge of, the best pain and itch care for these patients is minimal. Evidence-based best care practice guidelines are needed to establish a base of knowledge and practice for practitioners of many disciplines to improve the quality of life for both adult and pediatric patients with EB. Proceeds from the sale of this book go to support an elderly disabled person.