Living with Spinal Muscular Atrophy PDF Download
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Author: Trina Allen
Publisher:
ISBN: 9780595414642
Category : Motor neurons
Languages : en
Pages : 0
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Book Description
"November 3, 2003-April 27, 2004. Our love, our life, our angel. A day by day journey with SMA. Learn about SMA. See how life can change overnight. Feel the courage and strength. And much more"--Subtitles
Author: Trina Allen
Publisher:
ISBN: 9780595414642
Category : Motor neurons
Languages : en
Pages : 0
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Book Description
"November 3, 2003-April 27, 2004. Our love, our life, our angel. A day by day journey with SMA. Learn about SMA. See how life can change overnight. Feel the courage and strength. And much more"--Subtitles
Author: Jan Grue
Publisher: FSG Originals
ISBN: 0374600791
Category : Biography & Autobiography
Languages : en
Pages : 272
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Book Description
"A quietly brilliant book that warms slowly in the hands." —Dwight Garner, The New York Times I am not talking about surviving. I am not talking about becoming human, but about how I came to realize that I had always already been human. I am writing about all that I wanted to have, and how I got it. I am writing about what it cost, and how I was able to afford it. Jan Grue was diagnosed with spinal muscular atrophy at the age of three. Shifting between specific periods of his life—his youth with his parents and sister in Norway; his years of study in Berkeley, St. Petersburg, and Amsterdam; and his current life as a professor, husband, and father—he intersperses these histories with elegant, astonishingly wise reflections on the world, social structures, disability, loss, relationships, and the body: in short, on what it means to be human. Along the way, Grue moves effortlessly between his own story and those of others, incorporating reflections on philosophy, film, art, and the work of writers from Joan Didion to Michael Foucault. He revives the cold, clinical language of his childhood, drawing from a stack of medical records that first forced the boy who thought of himself as “just Jan” to perceive that his body, and therefore his self, was defined by its defects. I Live a Life Like Yours is a love story. It is rich with loss, sorrow, and joy, and with the details of one life: a girlfriend pushing Grue through the airport and forgetting him next to the baggage claim; schoolmates forming a chain behind his wheelchair on the ice one winter day; his parents writing desperate letters in search of proper treatment for their son; his own young son climbing into his lap as he sits in his wheelchair, only to leap down and run away too quickly to catch. It is a story about accepting one’s own body and limitations, and learning to love life as it is while remaining open to hope and discovery.
Author: Kurt E. Beach
Publisher: Beach Publishing LLC
ISBN: 9780578971971
Category : Biography & Autobiography
Languages : en
Pages : 208
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Book Description
This inspiring memoir tells the story of a young man who is diagnosed with spinal muscular atrophy-a rare muscular disease-at a young age. In Searching for Every Step, author Kurt Beach offers his insight on the steps he took to find his true purpose in life. In his memoir, Beach recalls the steps and missteps he took in order to manage his bout with SMA and how this rare condition played a part in many decisions he made throughout his life. Despite his rare circumstances, his struggles are struggles we all face. Through his condition, he finds the courage and strength to overcome physical, emotional, and social obstacles concerning his career aspirations, schooling, romantic relationships, and even adoption. During a life changing event, Beach finds what he is missing in life. This experience not only shows him what kind of strength he has but what his true purpose in life is. Searching for Every Step delivers wisdom and inspiration to anyone who has struggled through life and gives them the inspiration to shift their focus away from their troubles and toward a more positive, faith-driven life
Author: Shane Burcaw
Publisher: Roaring Brook Press
ISBN: 1250197880
Category : Juvenile Nonfiction
Languages : en
Pages : 40
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Book Description
Not So Different offers a humorous, relatable, and refreshingly honest glimpse into Shane Burcaw’s life. Shane tackles many of the mundane and quirky questions that he’s often asked about living with a disability, and shows readers that he’s just as approachable, friendly, and funny as anyone else. Shane Burcaw was born with a rare disease called spinal muscular atrophy, which hinders his muscles’ growth. As a result, his body hasn’t grown bigger and stronger as he’s gotten older—it’s gotten smaller and weaker instead. This hasn’t stopped him from doing the things he enjoys (like eating pizza and playing sports and video games) with the people he loves, but it does mean that he routinely relies on his friends and family for help with everything from brushing his teeth to rolling over in bed. A Chicago Public Library Best Book of 2017
Author: Zili Sloboda
Publisher: Springer Science & Business Media
ISBN: 0387244166
Category : Medical
Languages : en
Pages : 237
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Book Description
As the drug abuse epidemic evolves, so do the tools needed to understand and treat it. Accordingly, Epidemiology of Drug Abuse takes the long view, cogently outlining what the book calls "the natural history of drug abuse" and redefining its complex phenomena to reflect our present-day knowledge. Twenty-six eminent contributors discuss the state and future of the field, balancing the practical concerns involved in gathering drug abuse data with the ethics of using the information. - Current thinking on pathways and etiology, as well as medical, psychological, and social sequelae of drug abuse - Proven, up-to-date methodologies for assessment - Challenges of gathering data from high-risk and other user populations - Sampling and application issues - Uses, sources, and limitations of treatment data - Analytical papers applying the methodologies to specific and global studies - The role of epidemiology studies in developing prevention strategies With this multifaceted approach to the subject, Epidemiology of Drug Abuse provides researchers and educators with a reference that sheds significant light on infrequently covered areas. In addition, its breadth and accessibility of coverage make it a teaching text suitable to courses in epidemiology, public health, and drug abuse.
Author: Shane Burcaw
Publisher: Macmillan
ISBN: 162672007X
Category : Juvenile Nonfiction
Languages : en
Pages : 257
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Book Description
"With acerbic wit & a hilarious voice, Shane Burcaw's YA memoir describes the challenges he faces as a 20-year-old with muscular atrophy. From awkward handshakes to trying to finding a girlfriend and everything in between"--
Author: Kevan Chandler
Publisher: Worthy Books
ISBN: 1546014691
Category : Self-Help
Languages : en
Pages : 277
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Book Description
A story about friendships and commitment to one another so incredible you wouldn't believe it if it wasn't true. Kevan is just one of the guys. It's impossible to know him and not become a little more excited about life. He is an inspiring man permeated by joy, unafraid of sorrow, full of vitality and life! His sense of humor is infectious and so is his story. He grew up, he says, at "belt-buckle level" and stayed there until Kevan's beloved posse decided to leave his wheelchair at the Atlanta airport, board a plane for France, and have his friends carry him around Europe to accomplish their dream to see the world together! Kevan's beloved posse traveled to Paris, England, and Ireland where, in the climax of their adventure, they scale 600 feet up to the 1,400-year-old monastic fortress of Skellig Michael. In We Carry Kevan the reader sits with Kevan, one head-level above everyone else for the first time in his life and enjoys camaraderie unlike anything most people ever experience. Along the way they encounter the curiosity and beauty of strangers, the human family disarmed by grace, and the constant love of God so rich and beautiful in the company of good friends. We Carry Kevan displays the profound power of friendship and self-sacrifice.
Author: National Organization for Rare Disorders
Publisher: Lippincott Williams & Wilkins
ISBN: 9780781730631
Category : Medical
Languages : en
Pages : 982
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Book Description
NORD Guide to Rare Disorders is a comprehensive, practical, authoritative guide to the diagnosis and management of more than 800 rare diseases. The diseases are discussed in a uniform, easy-to-follow format--a brief description, signs and symptoms, etiology, related disorders, epidemiology, standard treatment, investigational treatment, resources, and references.The book includes a complete directory of orphan drugs, a full-color atlas of visual diagnostic signs, and a Master Resource List of support groups and helpful organizations. An index of symptoms and key words offers physicians valuable assistance in finding the information they need quickly.
Author: Ben Mattlin
Publisher: Skyhorse
ISBN: 1620875144
Category : Biography & Autobiography
Languages : en
Pages : 313
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Book Description
Ben Mattlin lives a normal, independent life. Why is that interesting? Because Mattlin was born with spinal muscular atrophy, a congenital weakness from which he was expected to die in childhood. Not only did Mattlin live through childhood, he became one of the first students in a wheelchair to attend Harvard, from which he graduated and became a professional writer. His advantage? Mattlin’s life happened to parallel the growth of the disability rights movement, so that in many ways he did not feel that he was disadvantaged at all, merely different. Miracle Boy Grows Up is a witty, unsentimental memoir that you won’t forget, told with engrossing intelligence and a unique perspective on living with a disability in the United States.
Author: Shane Burcaw
Publisher: Roaring Brook Press
ISBN: 1626727694
Category : Young Adult Nonfiction
Languages : en
Pages : 149
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Book Description
With his signature wit, twenty-something author, blogger, and entrepreneur Shane Burcaw is back with an essay collection about living a full life in a body that many people perceive as a tragedy. From anecdotes about first introductions where people patted him on the head instead of shaking his hand, to stories of passersby mistaking his able-bodied girlfriend for a nurse, Shane tackles awkward situations and assumptions with humor and grace. On the surface, these essays are about day-to-day life as a wheelchair user with a degenerative disease, but they are actually about family, love, and coming of age. Shane Burcaw is one half of the hillarious YouTube duo, Squirmy and Grubs, which he runs with his girlfriend, now fiancee, Hannah Aylward.
