In 2002, diagnosed with an extremely rare and life-threatening diseasefibrosing mediastinitisat the age of twenty-seven, author Rebecca Lalk was told the average life expectancy with this condition was ten years. Doctors knew very littlethere was no cure, and limited treatment options were available. In Ill Take My Disease Rare, Please, she shares her journey dealing with the diagnosis and the disease that affects only 600 hundred people in the United States. She narrates how her illness began to attack with a vengeance leaving her to fight extreme fatigue, chest pressure, memory loss, head rushes, along with the chronic cough that began to overtake her life. She looked healthy, but nobody listened or took her seriously about the severity of her symptoms. This memoir tells Lalks story full of perseverance and determination. Ill Take My Disease Rare, Please describes how the diagnosis led to a new spiritual awakening, and how she was spurred to push forward with faith, family, and her sense of humor. Lalks determination also led her to one doctor who was able to help her and who told her to go live her life. With Gods grace, Lalk has done just that. She has since outlived that diagnosis by three years and has been referred to as a walking miracle.
In 2002, diagnosed with an extremely rare and life-threatening disease-fibrosing mediastinitis-at the age of twenty-seven, author Rebecca Lalk was told the average life expectancy with this condition was ten years. Doctors knew very little-there was no cure, and limited treatment options were available. In I'll Take My Disease Rare, Please, she shares her journey dealing with the diagnosis and the disease that affects only 600 hundred people in the United States. She narrates how her illness began to attack with a vengeance leaving her to fight extreme fatigue, chest pressure, memory loss, head rushes, along with the chronic cough that began to overtake her life. She looked healthy, but nobody listened or took her seriously about the severity of her symptoms. This memoir tells Lalk's story full of perseverance and determination. I'll Take My Disease Rare, Please describes how the diagnosis led to a new spiritual awakening, and how she was spurred to push forward with faith, family, and her sense of humor. Lalk's determination also led her to one doctor who was able to help her and who told her to go live her life. With God's grace, Lalk has done just that. She has since outlived that diagnosis by three years and has been referred to as a walking miracle.
LOS ANGELES TIMES AND PUBLISHERS WEEKLY BESTSELLER • The powerful memoir of a young doctor and former college athlete diagnosed with a rare disease who spearheaded the search for a cure—and became a champion for a new approach to medical research. “A wonderful and moving chronicle of a doctor’s relentless pursuit, this book serves both patients and physicians in demystifying the science that lies behind medicine.”—Siddhartha Mukherjee, New York Times bestselling author of The Emperor of All Maladies and The Gene David Fajgenbaum, a former Georgetown quarterback, was nicknamed the Beast in medical school, where he was also known for his unmatched mental stamina. But things changed dramatically when he began suffering from inexplicable fatigue. In a matter of weeks, his organs were failing and he was read his last rites. Doctors were baffled by his condition, which they had yet to even diagnose. Floating in and out of consciousness, Fajgenbaum prayed for a second chance, the equivalent of a dramatic play to second the game into overtime. Miraculously, Fajgenbaum survived—only to endure repeated near-death relapses from what would eventually be identified as a form of Castleman disease, an extremely deadly and rare condition that acts like a cross between cancer and an autoimmune disorder. When he relapsed while on the only drug in development and realized that the medical community was unlikely to make progress in time to save his life, Fajgenbaum turned his desperate hope for a cure into concrete action: Between hospitalizations he studied his own charts and tested his own blood samples, looking for clues that could unlock a new treatment. With the help of family, friends, and mentors, he also reached out to other Castleman disease patients and physicians, and eventually came up with an ambitious plan to crowdsource the most promising research questions and recruit world-class researchers to tackle them. Instead of waiting for the scientific stars to align, he would attempt to align them himself. More than five years later and now married to his college sweetheart, Fajgenbaum has seen his hard work pay off: A treatment he identified has induced a tentative remission and his novel approach to collaborative scientific inquiry has become a blueprint for advancing rare disease research. His incredible story demonstrates the potency of hope, and what can happen when the forces of determination, love, family, faith, and serendipity collide. Praise for Chasing My Cure “A page-turning chronicle of living, nearly dying, and discovering what it really means to be invincible in hope.”—Angela Duckworth, #1 New York Times bestselling author of Grit “[A] remarkable memoir . . . Fajgenbaum writes lucidly and movingly . . . Fajgenbaum’s stirring account of his illness will inspire readers.”—Publishers Weekly
Told she wouldn't live to see sixteen, then eighteen, then by sure twenty-one, Patty Windish, now sixty-four, had undergone a roller coaster of challenges suffering from a rare bone disease, polyostotic fibrous dysplasia, or a rare form of osteotis fibrosa cystica. Feeling so very alone, she attempted suicide twice. When spiritual interventions occurred, she turned to the only steady in her life -God. When you live in severe pain and in constant turmoil, knowing all you have to look forward to is more surgery and more broken bones, what is there to live for? Is life worth living? Where's the rainbow after the storm when the storm continues to ravage? Read this fascinating story to see how one person who suffers from a very rare bone disease has learned to appreciate the ups and downs in life, who learned the most important lesson in life through all the critical, climactic points: you are never alone. No matter the situation or outcome in your life, you're never alone.
Two friends Ema and Joshua their lives change completely when Josh moves years pass and Ema copes she then fi nds out she and her parents have to move to a different state Colorado there she meets up again with Josh but little did she know that thats the place where her life would change she goes to college and thats where she meets the Ezniezs Alisha, Jessieh, Cassandrah, Maxxon and Robert. You see the thing is the ezniez along with Joshuas family hide a secret they are vampires and Josh is a jaguar you see both Robert and Josh love Ema and they wont give up till she chooses one.
Rare Diseases and Orphan Drugs shows that much of what we now know about common diseases has been achieved by studying rare diseases. It proposes that future advances in the prevention, diagnosis, and treatment of common diseases will come as a consequence of our accelerating progress in the field of rare diseases. Understanding the complex steps in the development of common diseases, such as cancer, cardiovascular disease, and metabolic diseases, has proven a difficult problem. Rare diseases, however, are often caused by aberrations of a single gene. In rare diseases, we may study how specific genetic defects can trigger a series of events that lead to the expression of a particular disease. Often, the disease process manifested in a certain rare disease is strikingly similar to the disease process observed in a common disease. This work ties the lessons learned about rare diseases to our understanding of common ones. Chapters covering the number of common diseases are minimized, while rare diseases are introduced as single diseases or as members of diseases classes. After reading this book, readers will appreciate how further research into the rare diseases may lead to new methods for preventing, diagnosing, and treating all diseases, rare or common. - Makes rare diseases relevant to clinicians and researchers by tying lessons learned about the rare diseases to our understanding of the common diseases - Stresses basic pathologic mechanisms that account for human disease (e.g., disorders of cell development, replication, maintenance, function and structure), that can be understood without prior training in pathology - Discusses advanced concepts in molecular biology and genetics in a simple, functional context appropriate for medical trainees and new researchers - Offers insights into how further research into rare diseases may lead to new methods for preventing, diagnosing, and treating all diseases
Most of us expect to meander through the motions of love, marriage and (textbook) baby in the carriage, but once in a while life has something a little more special in store. Special is an uplifting, candid companion for those in the early stages of navigating a child’s disability, offering honest, reassuring and relatable insight into a largely unknown (and so, initially terrifying) part of our world. It features antidotes to the obsessions at the forefront of a newly minted special-needs parent’s mind: Why has this happened to me? Will I ever stop comparing my child to typical children? How will my relationship survive? Will I be able to work again? Should I have another baby? And the big one: What will my future look like? Inspired by the author’s own crash-landing into special-needs parenthood, and shaped by her conversations with parents of children with wide-ranging disabilities, alongside specialists, psychologists and researchers, Special shares stories, guidance and simple coping strategies to soothe and surprise anyone whose life has taken an unexpected turn.
This New York Times–bestselling saga of two brothers in postwar America, the basis for the classic miniseries, is “a book you can’t put down” (The New York Times). Siblings Rudy, Tom, and Gretchen Jordache grow up in a small town on the Hudson River. They’re in their teens in the 1940s, too young to go to war but marked by it nevertheless. Their father is the local baker, and nothing suggests they will live storied lives. Yet, in this sprawling saga, each member of the family pushes against the grain of history and confronts the perils and pleasures of a world devastated by conflict and transformed by American commerce and culture. A memorable novel by one of America’s greatest twentieth-century authors, Rich Man, Poor Man offers a gripping ride through America between the Second World War and Vietnam. It was made into one of the first primetime TV mini-series, and starred Nick Nolte, Peter Strauss, and Susan Blakely. This ebook features an illustrated biography of Irwin Shaw including rare images and never-before-seen documents from the author’s estate.
The Bleeding Heart: The Eternal Love Novels By: Shellbie Breaux What would you do in a world that was not what it seemed? In a world that our deepest, darkest fears, and the boogie monsters that we swore were under our beds at night were real. Join me in a story about a girl that should have never existed and a guy that was disowned by his pack and left to fight for himself. What will happen and is love to overcome all boundaries and taboos of their world? My feet pounding against the ground. My heart racing to keep up, I ran, I ran as hard I could, I can’t fail. I thought I can’t fail her, she must live for Abigail, she must live for all who suffered at the hands of those monsters. His speed slowed at the memory of his beautiful wife that died only a couple hours ago giving birth to his one and only baby girl. FLEE!! His Bain screamed at him. They are right behind me. RUN!! He could sense his pursuit behind him, he could hear them thrashing through the forest screaming at and cursing as they chased him. He increased his speed. Yes, he thought chase me because every step you take is a step away from my angel Isabella, you will not have her. “Give up they screamed behind me there is nowhere to run you will burn for the crimes you committed against your race.” He couldn’t help but laugh at that as he ran through the thick brush and undergrowth of the forest in the northern mountains of Montana, he laughed so hard he almost lost his footing, gathering his wits again, he screamed over his shoulder, “If loving another is a crime, then I would do it a thousand times more.” The Bleeding Heart follows a young lady who progresses through life that is constantly challenging her in her mortality, her personality, and basically everything about her. It throws obstacles at her that normal people probably wouldn't get over and with her. It makes her personality and her overall character grow in to a story line hero, even though she doesn't really want to be a hero. The Bleeding Heart reminds us that we should never think we don't have a voice, and even though this life may make us seem as if we are on a rollercoaster going up and down and we can't seem to stop, we can't seem to make anything go right, we do have people who surround us who care enough about us to help.
