The Official Patient’s Sourcebook on Epidermolysis Bullosa: A Revised and 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 the treatment process. Although it also gives information useful to doctors, caregivers and other health professionals, it tells patients where and how to look for information covering virtually all topics related to Epidermolysis Bullosa, from the essentials to the most advanced areas of research. Given patients’ increasing
sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-of-charge, primary research results as well as more detailed information via the Internet. In addition to extensive references accessible via the Internet, chapters include glossaries of
technical or uncommon terms. This is a “must have” reference book
for patients, parents, caregivers, and libraries with medical collections.
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Epidermolysis Bullosa – A Medical Dictionary,
Bibliography, and Annotated Research Guide to Internet
by Icon Health Publications
This is a 3-in-1 reference book. It gives a complete medical dictionary
covering hundreds of terms and expressions relating to Epidermolysis Bullosa. It also gives extensive lists of
bibliographic citations. Finally, it provides information to users
on how to update their knowledge using various Internet resources.
The book is designed for physicians, medical students preparing
for Board examinations, medical researchers, and patients who want to become familiar with research dedicated to Epidermolysis
Bullosa.
If your time is valuable, this book is for you. First, you will not waste time searching the Internet while missing a lot of relevant information. Second, the book also saves you time indexing and defining entries. Finally, you will not waste time and money printing hundreds of web pages.
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Tough Cookie
by Lillian Sparks
This biographical book tells the story of Byron Todd Sparks, a.k.a. “Tough Cookie,” and his family’s journey of faith amidst Recessive Dystrophic Epidermolysis Bullosa, a painful, incurable skin disorder.
>Purchase this Book New at Gospel Publishing
($9.99)
>Purchase this Book Used at Amazon (around $3.00 on average)
>Purchase this Book at Half.com and in the search engine type
LillianvSparks (usually around $2.00-2.50 on average)
>Please note: the cover art may be different on earlier editions of this book.
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>
Parents Cry Too
by Lillian Sparks
A follow-up to Tough Cookie, this biographical book details how the “Tough Cookie” miracle touched the hearts of thousands of people, encouraging their faith in God.
>Purchase this Book New at Gospel Publishing
($9.99)
>Purchase this Book Used at Amazon (around $7.00 on average)
>Purchase this Book at Half.com and in the search engine type
Lillian Sparks (usually around $2.00-2.50 on average)
>Please note: the cover art may be different on earlier editions of this book.
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Living with Epidermolysis Bullosa (Paperback)
Compiled by Silvia Corradin, edited by Brenda G.
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.
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Thick Skinned
by Dan Cogliano
About the Author
Dan Cogliano was born with a condition (yes, Epidermolysis Bullosa) that in some people makes even the touch of another human or drink from a glass of water a potential cause for medical treatment. But Dan’s perseverance in the face of this malady paid off big time.
First, as an actor, he appeared on the daytime soap opera “Another World” and in over two dozen off-Broadway classical repertory productions. Then he went on to the job of vice president in the international marketing division of “Merrill Lynch.” And along the way he became a husband, father, and athlete.
Book Description
Here is a personal story of how we are shaped by the life we are dealt
and how by rising to those challenges we forge our own lives. This
is a story of getting through the pain, the tough times, and the
seemingly impossible. Above all, it is story of what it means to
be human.
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Special Mommy Chronicles
(Paperback)
by Silvia Corradin
The Special Mommy Chronicles is a series of columns written by Silvia C., the mom of a Special Need
child (son suffers from the Recessive
Dystrophic form of Epidermolysis Bullosa) which offers
insights, stories and struggles that go along in raising special kids.
Book may be purchased directly from the publisher by following THIS LINK.
It’s also available at Amazon.com and Barnes& Noble Booksellers.
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Epidermolysis Bullosa : Basic and Clinical
Aspects
by Andrew N. Lin, D. Martin Carter
(Editor)
The clinical management of the rare skin disease known as Epidermolysis Bullosa (EB) poses a problem for those dermatologists who have never seen the disease
before. All the information needed to treat patients with EB is now accessible in this practical guide written by recognized experts for the practicing physician. In a systematic and thorough fashion, the editors present the basic science necessary to understand the pathogenesis of the disease, as well as system by
system coverage of the extracutaneous manifestations. This is the
first volume ever to present clearly all aspects of Epidermolysis
Bullosa in a form appropriate for use in daily clinical management
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Epidermolysis Bullosa : Clinical,
Epidemiologic, and Laboratory Advances, and the Findings of the
National Epidermolysis Bullosa Registry
by Jo-David Fine
(Editor), Eugene A., MD Bauer (Editor), Joseph, MD McGuire, Eugene
E. Bauer (Editor), Alan Moshell (Editor)
The first full report of the Registry, which
was established in September 1986 to track the protean family of
mostly inherited skin diseases. Scientists involved with the
project provide a definition and historical overview and explore
such aspects as the epidemiology in the US, Canadian, and European
study populations; cutaneous and skin-associated musculoskeletal
manifestations; the risk of selected major extracutaneous
outcomes; premature death; altered nutrition; oral manifestations;
the molecular biology; non-molecular approaches to treatment; and
the rare acquired form. — Copyright © 1999 Book News, Inc.,
Portland, OR All rights reserved Book News, Inc.®, Portland,
OR
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Jonny Kennedy (Paperback)
The Story
of the Boy Whose Skin Fell Off
by Roger Stutter (Author), Nell McAndrew (Foreword)
Jonny Kennedy was the star of the
unforgettable Emmy award-winning documentary The Boy Whose Skin Fell Off. He was an extraordinary character determined to live an ordinary life despite being born with the agonising condition Recessive Dystrophic Epidermolysis Bullosa (EB), which meant that his skin could literally fall off at the slightest touch. It was a
daily struggle he faced with courage, determination and wit, offering inspiration to millions around the world. Tragically, Jonny was just 36 when he lost a final battle to skin cancer. This is his moving, honest and uplifting story. ‘I feel very fortunate to have met such a special person and I will never forget him.’ -
Nell McAndrew
About the Author
Roger Stutter was one of Jonny Kennedy’s closest friends, and spent many months recording Jonny’s innermost thoughts and recollections for this extraordinary memoir.
Additional memories are provided by Edna Kennedy, Jonny’s mum, and
Nell McAndrew, who befriended Jonny in the final months before his
death. It is hoped the book will raise awareness for Jonny’s
condition and for the charities that continue his work.
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Know of another book specifically about EB not listed here? Message me on our Facebook Page and let us know!
E.B. Some Call It Epidermalysis Bullosa, I Call It Extraordinarily Beautiful by Derra Nicole Sabo
