This book has been created for parents 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 parents where and how to look for information covering virtually all topics related to incontinentia pigmenti (also Bloch-Siemens Incontinentia Pigmenti Melanoblastosis Cutis Linearis; Bloch-Siemens-Sulzberger Syndrome; Bloch-Sulzberger Syndrome; Pigmented Dermatosis, Siemens-Bloch type), from the essentials to the most advanced areas of research. The title of this book includes the word official. This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on incontinentia pigmenti. Given parents' 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. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard-copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. In addition to extensive references accessible via the Internet, chapters include glossaries of technical or uncommon terms.
From the Publisher
This is a "must have" reference book for patients, parents, caregivers, and libraries with medical collections. This sourcebook is organized into three parts. Part I explores basic techniques to researching incontinentia pigmenti (e.g. finding guidelines on diagnosis, treatments, and prognosis), followed by a number of topics, including information on how to get in touch with organizations, associations, or other patient networks dedicated to incontinentia pigmenti. It also gives you sources of information that can help you find a doctor in your local area specializing in treating incontinentia pigmenti. Collectively, the material presented in Part I is a complete primer on basic research topics for patients with incontinentia pigmenti. Part II moves on to advanced research dedicated to incontinentia pigmenti. Part II is intended for those willing to invest many hours of hard work and study. It is here that we direct you to the latest scientific and applied research on incontinentia pigmenti. When possible, contact names, links via the Internet, and summaries are provided. In general, every attempt is made to recommend "free-to-use" options. Part III provides appendices of useful background reading for all patients with incontinentia pigmenti or related disorders. The appendices are dedicated to more pragmatic issues faced by many patients with incontinentia pigmenti. Accessing materials via medical libraries may be the only option for some readers, so a guide is provided for finding local medical libraries which are open to the public. Part III, therefore, focuses on advice that goes beyond the biological and scientific issues facing patients with incontinentia pigmenti.
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