Author: Kristi Hopkins Publisher: CreateSpace ISBN: 9781456358693 Category : Neurofibromatosis Languages : en Pages : 0
Book Description
1 in 3000 people are born with Neurofibromatosis. It affects all of us in different ways. For some, Neurofibromatosis is as clear as the tumors on their face. For others, it hides beneath the surface, creating tumors that destroy hearing, vision, and more. Many of us are misdiagnosed, misunderstood, and often simply missed by a world of medicine that doesn't have a full grasp on all teh effects of NF. Stereotyped, ignored, or shunned by a world who thinks we either have the Elephant Man's disease, common migraines, or a few too many moles and birthmarks. In a society that values beauty so highly, NF'ers often choose to hide from others, and end up hiding from themselves. In 2007, Kristi chose to stop hiding, and start Thriving, as NF became a bigger part of my life than ever before, taking a firm grip on the health of three of my six children. Most people with NF, or any of a thousand other genetic disorders, focus on surviving from day to day. My kids deserve more than just to survive. And so do YOU. Thriving with Neurofibromatosis. We ALL have a story, this is mine.
Author: Bruce R. Korf Publisher: Thieme ISBN: 1604065133 Category : Medical Languages : en Pages : 268
Book Description
Here is the state-of-the-art on recognizing, managing and living with neurofibromatosis (NF) for patients, families, and health care professionals. From new genetic and diagnostic advances, to associated cardiovascular and endocrine abnormalities, to the significant psychosocial impact of NF, the book is packed with clear, practical guidance for understanding and living with this disability.Special features: A complete diagnostic guide to help you recognize NF-related symptoms--with a timeline for when they might appear New treatment options for NF, including pain control Coverage of the newly discovered form of NF, schwannomatosis Personal perspectives from NF patients and their families Glossary that defines medical terminology With the great diagnostic and treatment advances achieved in the last decade, and research proceeding rapidly, the future for patients with NF has never been brighter. For all individuals living with the challenges of this disability, the book brings you to the forefront of medical knowledge. Make sure it is within close reach for fast and easy reference.
Author: Christopher Maloney Publisher: Createspace Independent Publishing Platform ISBN: 9781542656542 Category : Languages : en Pages : 54
Book Description
For the parents of NF1 children or newly diagnosed adults, Dr. Maloney covers the genetics of NF1 simply. He shows why the disease varies so widely in its symptoms and gives cutting edge research possibilities for its treatment.
Author: Vincent M. Riccardi Publisher: ISBN: Category : Medical Languages : en Pages : 344
Book Description
A comprehensive review of the clinical and genetic aspects of a disease that affects over one million people worldwide, based on the cumulative experience of the longest continuously functioning program of its kind (Riccardi directs The Neurofibromatosis Institute, Pasadena, California--his vantage point is that of an accumulated 3,700 patient-years of direct observation and follow-up of patients with NF, and a total of 22,900 patient-years, counting from the time of birth until either death or January 1991). Thoroughly revised and updated (first edition, 1986) to include the latest advances in molecular biology and methods of treatment, and contains a glossary and extensive bibliography (well over 1,000 citations). Annotation copyrighted by Book News, Inc., Portland, OR
Author: Janet Damon Publisher: Tate Publishing ISBN: 1618627120 Category : Biography & Autobiography Languages : en Pages : 218
Book Description
At four years old, a mysterious bump appeared on the inside of Beth's left wrist, so I took her to see a doctor. He brought out his books, studied them carefully, and returned with a startling diagnosis. 'Neurofibromatosis.' In shock, confusion, and dismay, my mind reeled. What on earth was it, and how did Beth get it? Was there a cure? Could her older sister or the baby I was now carrying get it? These and many other questions begged for answers. Thus began my quest to find help for my daughter—one that would take many unexpected and nearly tragic turns.Rising Above: Facing the Dragon of Neurofibromatosisis the true account of Beth's indomitable, uplifting spirit while coping with a disfiguring and disabling disorder of her central nervous system. One hundred percent of cases are congenital, meaning if you aren't born with NF, you will never have it. But lack of knowledge leads to fear, and many think NF is contagious, causing those with NF, like Beth, to feel isolated and judged. Told by her mother, Janet, along with snippets of Beth's story in her own words,Rising Abovewill encourage those going through a difficult time, inspire those who are facing or have faced trials, and educate those who may not be aware of this tragic condition.
Author: Joan Ablon Publisher: Praeger ISBN: 0865692874 Category : Health & Fitness Languages : en Pages : 0
Book Description
A chronicle of the life experiences of adults with neurofibromatosis 1, a neurological genetic condition for many years misdiagnosed as "The Elephant Man's Disease." Affected persons deal with an unpredictable and potentially stigmatizing disorder, the symptoms of which range from physical disfigurement to severe learning disorders. Ablon offers suggestions for families, support systems, and health care providers to enhance coping skills and self image of the affected persons.
Author: Dr Frank Graham, III Publisher: ISBN: 9781312323568 Category : Languages : en Pages : 0
Book Description
Neurofibromatosis is an ongoing battle for some people. It is a condition that affects thousands of people. The problem is that not too many people are aware of what it is. Therefore, I wrote this book because I suffer from NF1. This book is a look into my personal life with this condition.
Author: Jeremy Murphy Publisher: Nova Science Publishers ISBN: 9781536107050 Category : Neurofibromatosis Languages : en Pages : 0
Book Description
Neurofibromatosis 1 (NF1) is a neurocutaneous disorder with a heterogenous presentation affecting 1 in 2500 to 1 in 3000 births. Our understanding of the pathogenesis of NF1 has increased dramatically since the discovery of the NF1 gene in 1990 and the role its product, neurofibromin, plays in tumor suppression. This book provides new research on the diagnosis, management and health impacts of NF.
Author: Kristi Hopkins
Author: Bruce R. Korf
Author: Kathryn North
Author: Christopher Maloney
Author: Vincent M. Riccardi
Author: Janet Damon
Author: Joan Ablon
Author: Lee Roy Morgan
Author: Dr Frank Graham, III
Author: Jeremy Murphy