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.
This book, edited by Matthias Karajannis, MD, MS and Jeffrey Allen, MD, who direct the Comprehensive NF Center at NYU Langone Medical Center in New York, represents a valuable resource for both scientists and clinicians involved in NF1 ...
This book provides new research on the diagnosis, management and health impacts of NF.
This book discusses the diagnosis, managements and clinical outcomes for neurofibromatosis.
This book is written for a broad readership ranging from students to professionals. It provides the reader with a basic overview of the disease before discussing the most recent research and therapeutic developments in detail.