{"id":931,"date":"2012-05-13T08:17:44","date_gmt":"2012-05-12T23:17:44","guid":{"rendered":"http:\/\/blog.ebinfoworld.com\/?p=931"},"modified":"2012-05-13T08:18:42","modified_gmt":"2012-05-12T23:18:42","slug":"books-about-epidermolysis-bullosa","status":"publish","type":"post","link":"https:\/\/blog.ebinfoworld.com\/?p=931","title":{"rendered":"Books About Epidermolysis Bullosa"},"content":{"rendered":"
\n

\"\"<\/a><\/strong>The\u00a0Official Patient’s Sourcebook on Epidermolysis Bullosa: A Revised\u00a0and Updated Directory for the Internet Age <\/strong><\/a>
\nThis book has been created for patients who
\nhave decided to make education and research an integral part of\u00a0the treatment process. Although it also gives information useful\u00a0to doctors, caregivers and other health professionals, it tells\u00a0patients where and how to look for information covering virtually\u00a0all topics related to Epidermolysis Bullosa, from the essentials\u00a0to the most advanced areas of research. Given patients’ increasing
\nsophistication in using the Internet, abundant references to\u00a0reliable Internet-based resources are provided throughout this\u00a0sourcebook. Where possible, guidance is provided on how to obtain\u00a0free-of-charge, primary research results as well as more detailed\u00a0information via the Internet. In addition to extensive references accessible via the Internet, chapters include glossaries of
\ntechnical or uncommon terms. This is a “must have” reference book
\nfor patients, parents, caregivers, and libraries with medical\u00a0collections.<\/p>\n

~~~~~~~~~~~~~~<\/p>\n<\/div>\n

Epidermolysis Bullosa – A Medical Dictionary,<\/a>\"\"<\/a><\/strong><\/em> Bibliography, and Annotated Research Guide to Internet<\/a>
\nby Icon Health\u00a0Publications\u00a0<\/em>
\n<\/em><\/strong><\/a>
\nThis\u00a0is a 3-in-1 reference book. It gives a complete medical dictionary
\ncovering hundreds of terms and expressions relating to\u00a0Epidermolysis Bullosa. It also gives extensive lists of
\nbibliographic citations. Finally, it provides information to users
\non how to update their knowledge using various Internet resources.
\nThe book is designed for physicians, medical students preparing
\nfor Board examinations, medical researchers, and patients who want\u00a0to become familiar with research dedicated to Epidermolysis
\nBullosa.
\nIf your time is valuable,\u00a0this book is for you. First, you will not waste time searching the\u00a0Internet while missing a lot of relevant information. Second, the\u00a0book also saves you time indexing and defining entries. Finally,\u00a0you will not waste time and money printing hundreds of web\u00a0pages.<\/p>\n

~~~~~~~~~~~~~~<\/p>\n

Tough Cookie<\/strong>\"\"<\/strong>
\nby Lillian Sparks
\n<\/em>
\nThis biographical book tells the\u00a0story of Byron Todd Sparks, a.k.a. \u201cTough Cookie,\u201d and his family\u2019s journey of faith amidst Recessive Dystrophic\u00a0Epidermolysis Bullosa, a painful, incurable skin disorder.
\n>Purchase this Book New at Gospel Publishing<\/a><\/strong><\/p>\n

($9.99)<\/p>\n

>Purchase this Book Used at Amazon<\/a><\/strong> (around $3.00 on\u00a0average)<\/p>\n

>Purchase this Book at Half.com<\/a>\u00a0<\/strong>and in the search engine type
\nLillianvSparks (usually around $2.00-2.50 on average)<\/p>\n

>Please note: the cover art may be different\u00a0on earlier editions of this book.<\/p>\n

~~~~~~~~~~~~~~<\/p>\n

>\"\"Parents Cry Too<\/strong>
\nby Lillian Sparks
\n<\/em>
\nA follow-up to Tough Cookie, this\u00a0biographical book details how the \u201cTough Cookie\u201d miracle touched\u00a0the hearts of thousands of people, encouraging their faith in God.<\/p>\n

>Purchase this Book New at Gospel Publishing<\/a><\/strong>
\n($9.99)<\/p>\n

>Purchase this Book Used at Amazon<\/strong><\/a> (around $7.00 on average)<\/p>\n

>Purchase this Book at Half.com<\/a>\u00a0<\/strong>and in the search engine type
\nLillian\u00a0Sparks (usually around $2.00-2.50 on average)<\/p>\n

>Please note: the cover art may be different\u00a0on earlier editions of this book.<\/p>\n

~~~~~~~~~~~~~~<\/p>\n

\"\"<\/a><\/strong>
\nLiving with Epidermolysis Bullosa (Paperback)<\/a> <\/strong>
\nCompiled by Silvia\u00a0Corradin, edited by Brenda G.
\n<\/em>
\nLiving\u00a0with Epidermolysis Bullosa has first-hand accounts written by\u00a0parents and patients who are living or have lived with EB, and was\u00a0compiled to help people in general understand how it is like to\u00a0truly live with every form of Epidermolysis Bullosa; from the\u00a0milder Simplex variants, who are nonetheless not simple to live\u00a0with, to the more lethal, namely Junctional, whose patients\u00a0usually succumb to before their first birthday. The stories you\u00a0will read are from proud parents, or patients and their struggles\u00a0and how they are coping. Some stories are sad, some are\u00a0encouraging, and everything in between.<\/p>\n

~~~~~~~~~~~~~~<\/p>\n

\"\"<\/a><\/strong>Thick Skinned<\/strong><\/a>
\nby Dan Cogliano
\n<\/em>
\n<\/a>About the Author<\/em><\/strong>
\nDan\u00a0Cogliano was born with a condition (yes, Epidermolysis Bullosa)\u00a0that in some people makes even the touch of another human or drink\u00a0from a glass of water a potential cause for medical treatment. But\u00a0Dan’s perseverance in the face of this malady paid off big time.
\nFirst, as an actor, he appeared on the daytime soap opera “Another\u00a0World” and in over two dozen off-Broadway classical repertory\u00a0productions. Then he went on to the job of vice president in the\u00a0international marketing division of “Merrill Lynch.” And along the\u00a0way he became a husband, father, and athlete.<\/p>\n

<\/a>Book Description<\/em><\/strong>
\nHere\u00a0is a personal story of how we are shaped by the life we are dealt
\nand how by rising to those challenges we forge our own lives. This
\nis a story of getting through the pain, the tough times, and the
\nseemingly impossible. Above all, it is story of what it means to
\nbe human.<\/p>\n

~~~~~~~~~~~~~~<\/p>\n

\"\"<\/a><\/strong>Special Mommy Chronicles
\n(Paperback)<\/strong><\/a><\/strong>
\nby Silvia Corradin
\n<\/em>
\nThe Special Mommy Chronicles is a\u00a0series of columns written by Silvia C., the mom of a Special Need
\nchild (son suffers from the Recessive
\nDystrophic form of Epidermolysis Bullosa<\/em>) which offers
\ninsights, stories and struggles that go along in raising special\u00a0kids.<\/p>\n

Book may be\u00a0purchased directly from the publisher by following THIS LINK<\/strong><\/a>.<\/p>\n

It’s\u00a0also available at Amazon.com<\/strong><\/a> and Barnes& Noble<\/strong><\/a> Booksellers.<\/p>\n

~~~~~~~~~~~~~~<\/p>\n

\"\"<\/strong>Epidermolysis Bullosa : Basic and Clinical
\nAspects<\/strong> <\/a>
\nby Andrew N. Lin, D. Martin Carter
\n(Editor)<\/em>
\nThe clinical management of\u00a0the rare skin disease known as Epidermolysis Bullosa (EB) poses a\u00a0problem for those dermatologists who have never seen the disease
\nbefore. All the information needed to treat patients with EB is\u00a0now accessible in this practical guide written by recognized\u00a0experts for the practicing physician. In a systematic and thorough\u00a0fashion, the editors present the basic science necessary to\u00a0understand the pathogenesis of the disease, as well as system by
\nsystem coverage of the extracutaneous manifestations. This is the
\nfirst volume ever to present clearly all aspects of Epidermolysis
\nBullosa in a form appropriate for use in daily clinical\u00a0management<\/p>\n

~~~~~~~~~~~~~~<\/p>\n

\"\"<\/strong>Epidermolysis Bullosa : Clinical,
\nEpidemiologic, and Laboratory Advances, and the Findings of the
\nNational Epidermolysis Bullosa Registry<\/strong> <\/a>
\nby Jo-David Fine
\n(Editor), Eugene A., MD Bauer (Editor), Joseph, MD McGuire, Eugene
\nE. Bauer (Editor), Alan Moshell (Editor)<\/em>
\nThe first full report of the Registry, which
\nwas established in September 1986 to track the protean family of
\nmostly inherited skin diseases. Scientists involved with the
\nproject provide a definition and historical overview and explore
\nsuch aspects as the epidemiology in the US, Canadian, and European
\nstudy populations; cutaneous and skin-associated musculoskeletal
\nmanifestations; the risk of selected major extracutaneous
\noutcomes; premature death; altered nutrition; oral manifestations;
\nthe molecular biology; non-molecular approaches to treatment; and
\nthe rare acquired form. — Copyright \u00a9 1999 Book News, Inc.,
\nPortland, OR All rights reserved Book News, Inc.\u00ae, Portland,
\nOR<\/p>\n

~~~~~~~~~~~~~~<\/p>\n

\"\"<\/a>\u00a0Jonny\u00a0Kennedy (Paperback)<\/a>
\nThe Story
\nof the Boy Whose Skin Fell Off
\nby Roger Stutter (Author), Nell\u00a0McAndrew (Foreword)
\n<\/em>
\nJonny Kennedy was the star of the
\nunforgettable Emmy award-winning documentary The Boy Whose Skin\u00a0Fell Off. He was an extraordinary character determined to live an\u00a0ordinary life despite being born with the agonising condition\u00a0Recessive Dystrophic Epidermolysis Bullosa (EB), which meant that\u00a0his skin could literally fall off at the slightest touch. It was a
\ndaily struggle he faced with courage, determination and wit,\u00a0offering inspiration to millions around the world. Tragically,\u00a0Jonny was just 36 when he lost a final battle to skin cancer. This\u00a0is his moving, honest and uplifting story. ‘I feel very fortunate\u00a0to have met such a special person and I will never forget him.’ –
\nNell McAndrew<\/p>\n

About the\u00a0Author<\/strong>
\nRoger Stutter was one of Jonny Kennedy’s\u00a0closest friends, and spent many months recording Jonny’s innermost\u00a0thoughts and recollections for this extraordinary memoir.
\nAdditional memories are provided by Edna Kennedy, Jonny’s mum, and
\nNell McAndrew, who befriended Jonny in the final months before his
\ndeath. It is hoped the book will raise awareness for Jonny’s
\ncondition and for the charities that continue his work.<\/p>\n

~~~~~~~~~~~~~~<\/p>\n

Know of another book specifically about EB not listed here? Message me on our Facebook Page and let us know<\/a>!<\/p>\n","protected":false},"excerpt":{"rendered":"

The\u00a0Official Patient’s Sourcebook on Epidermolysis Bullosa: A Revised\u00a0and Updated Directory for the Internet Age This book has been created for patients who have decided to make education and research an integral part of\u00a0the treatment process. Although it also gives information useful\u00a0to doctors, caregivers and other health professionals, it tells\u00a0patients where and how to look for…<\/p>\n

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