Life with Epidermolysis Bullosa (EB) PDF Download
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Author: Jo-David Fine
Publisher: Springer Science & Business Media
ISBN: 3211792716
Category : Medical
Languages : en
Pages : 352
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Book Description
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.
Author: Jo-David Fine
Publisher: Springer Science & Business Media
ISBN: 3211792716
Category : Medical
Languages : en
Pages : 352
Get Book Here
Book Description
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.
Author: Silvia C.
Publisher: Lulu.com
ISBN: 143032886X
Category : Biography & Autobiography
Languages : en
Pages : 140
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Book Description
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.
Author: Alexa Boer Kimball
Publisher: Karger Medical and Scientific Publishers
ISBN: 3318024031
Category : Medical
Languages : en
Pages : 172
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Book Description
This publication presents currently available evidence about the extent to which dermatological diseases may, through their own nature as well as a multitude of comorbidities and their important interactions with social life, impair the life course of patients. Divided into four parts, the book starts with a brilliant introduction that highlights the importance of a life course approach in medicine from a medical as well as from a psychosocial point of view. The second part provides a basic presentation of the theoretical aspects of life course research and, more specifically, to the concepts of allostatic load and cumulative life course impairment (CLCI). The third part examines concepts related to CLCI, such as the 'quality of life in dermatology' or the 'major life changing decisions' influenced by dermatological diseases. The book concludes with an in-depth investigation of specific diseases where the concept of CLCI strikes as particularly relevant. The new and innovative evidence presented in this publication makes it essential reading to anyone who has to take social implications of skin diseases into account in their decision making: dermatologists, allergologists, pediatricians and general practitioners as well as researchers in medical sociology or opinion leaders in public health.
Author: Lloyd Minor
Publisher: John Wiley & Sons
ISBN: 1119672740
Category : Medical
Languages : en
Pages : 277
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Book Description
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.
Author: Dédée F. Murrell
Publisher: Springer
ISBN: 3662456982
Category : Medical
Languages : en
Pages : 724
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Book Description
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.
Author: Christine Frisbee
Publisher:
ISBN: 9780981618401
Category : Family & Relationships
Languages : en
Pages : 0
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Book Description
This work shows how siblings of sick or challenged children can transform into strong, spiritual, and caring people, full of insights that can help the whole family grow.
Author: Andreas D. Katsambas
Publisher: Springer Science & Business Media
ISBN: 3662071312
Category : Medical
Languages : en
Pages : 830
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Book Description
Dermatology is a specialty in the field of medicine which constantly changes at a vast rate. Alongside technology, new drugs, methods and treatments are continuously developed for the treatment of all common skin diseases. The first edition of the European Handbook of Dermatological Treatments received an overwhelming response from dermatovenereologists all over Europe. Its easy-to-read format, which is also used for this 2nd edition, is aimed at helping the physician to obtain comprehensive information at a glance. The three main sections listed alphabetically define the different diseases, the drugs available and the various methods of treatment used in dermatological practice. Each chapter begins with a brief section of the aetiology and pathogenesis of the skin disease, and leads into the description of the clinical characteristics, the diagnosis and the differential diagnosis. Followed by a detailed discussion on treatment methods, alternative methods are covered as well. Each section ends with a reference list for further reading. This new edition provides an excellent update including the newest developments of drugs, methods and treatments in dermatological practice, maintaining the clear structure and well-proven format. It is a very comprehensive and practical guide and should not be missed by those treating patients with skin diseases.
Author: Mary-Christine Strobel
Publisher:
ISBN: 9781628063073
Category :
Languages : en
Pages : 278
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Book Description
In Stuffing Cotton, Mary Christine Strobel gives an account of surviving a traumatic boat accident only to find herself less than a year later struggling with her faith when her world was shattered and turned upside down for decades by the most horrific disease you have never heard of, recessive dystrophic epidermolysis bullosa. Its destructiveness and cruelty knocked her down time and time again but she refused to accept defeat and fought to save the lives of her children. In this memoir, Mary Christine Strobel offers her insights on recessive dystrophic epidermolysis bullosa and how Stuffing Cotton became a part of her daily life.
Author: Lillian E. Sparks
Publisher:
ISBN: 9780882705163
Category : Fiction
Languages : en
Pages : 204
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Book Description
Author: Dominic Wilkinson
Publisher: Elsevier Health Sciences
ISBN: 0702077828
Category : Medical
Languages : en
Pages : 190
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Book Description
What should happen when doctors and parents disagree about what would be best for a child? When should courts become involved? Should life support be stopped against parents' wishes? The case of Charlie Gard, reached global attention in 2017. It led to widespread debate about the ethics of disagreements between doctors and parents, about the place of the law in such disputes, and about the variation in approach between different parts of the world. In this book, medical ethicists Dominic Wilkinson and Julian Savulescu critically examine the ethical questions at the heart of disputes about medical treatment for children. They use the Gard case as a springboard to a wider discussion about the rights of parents, the harms of treatment, and the vital issue of limited resources. They discuss other prominent UK and international cases of disagreement and conflict. From opposite sides of the debate Wilkinson and Savulescu provocatively outline the strongest arguments in favour of and against treatment. They analyse some of the distinctive and challenging features of treatment disputes in the 21st century and argue that disagreement about controversial ethical questions is both inevitable and desirable. They outline a series of lessons from the Gard case and propose a radical new 'dissensus' framework for future cases of disagreement. - This new book critically examines the core ethical questions at the heart of disputes about medical treatment for children. - The contents review prominent cases of disagreement from the UK and internationally and analyse some of the distinctive and challenging features around treatment disputes in the 21st century. - The book proposes a radical new framework for future cases of disagreement around the care of gravely ill people.
