Danas Disease

The reader meets five-year-old Dana, her dad, and her family on Wednesday November 13, 2002. A few things become obvious within the first few pages. Dana is sick, apparently with the flu, but something doesn't feel right with this diagnosis. There's something more sinister about this flu. Dana has Type 1 diabetes and this is complicating the already difficult situation involving her care. Dana's dad is disillusioned with God, but something in his relationship with Father Wes and in this troubled situation is drawing him to God. The reader is then taken back to Sunday January 16, 2000, before any of the troubles that Dana and her family now face have taken hold. The story reveals Dana and her family through her dad's perspective, from happy and carefree beginning through a three-year journey of suffering, quiet triumph, and personal awakening. Dana's Disease is based on the true accounts of the struggles of Dana Kanerva to be a healthy normal child, from soon after her third birthday to days before her sixth birthday.

Accompanying CD-ROM has the text and images from the book in electronic format.

New Look for a Bestselling Author's Mother-Daughter Collaboration Erin Walsh thinks her family is as close to perfect as it can be. When one grim diagnosis is all it takes to shake her family to the core, she wonders if they can ever go back to they way they were. Erin's attempts to go about life as usual feel empty and as each member of her family seems to struggle alone, she is about ready to give up on God. However, Erin has yet to learn that God will never give up on her.

God does work outside the box if we look, listen and feel. Read what others have learned in the presence of the dying and be blessed by their experiences.

A comprehensive guide to diseases of the immune system, listing names, symptoms, research, treatments available and more.

Fade to Gray (PB) By: Richard Masinton My wife, Dana, was stricken with early-onset Alzheimer’s disease at the horrifyingly young age of 55. Fade to Gray is our story about dealing with the only disease for which modern medicine has no means to prevent, cure or slow its progression. Shock, disbelief and overwhelming emotions followed her diagnosis with a disease we thought only happened to the very elderly. Furthermore, I was appalled to discover that the business of Alzheimer’s care is broken. Caring and competent caregivers are hard to find, and assisted care facilities and other health care institutions that pride themselves on caring and competence are often anything but caring and competent. I refused to accept “business as usual” in confronting and dealing with this terrible illness, so Fade to Gray was written to share my challenging experiences and offer hard-earned lessons learned during Dana’s struggle. With no chance to alter the outcome, my purpose is to offer practical help, comforting wisdom and enduring hope to those whose lives are ruined by Alzheimer’s, hoping to alter what may otherwise seem a hopeless experience. This is not a story about how to COPE with Alzheimer’s. Fade to Gray was written to help others DEAL with and MANAGE a disease that is becoming a public health epidemic and an ineffective support infrastructure that annually costs families more than sending a child to Harvard!

A Pulitzer Prize–winning reporter’s moving narrative of a group of patient advocates who are revolutionizing the way medical research is conducted. For more than half a century, medical advances have been driven by investigators launching experiments inside labs. Science is often conducted in isolation and geared toward the long view. This is the story of a group of people who tried to force the lab doors open: parents whose children had been diagnosed with a rare and fatal genetic condition known as Niemann-Pick disease type C. The disease prevents cells from processing cholesterol, which leads to the progressive loss of the brain’s and the body’s ability to function. Recognizing that there would never be a treatment in time to save their children if things stayed the same, the parents set up a collaboration with researchers and doctors in search of a cure. Reconciling different views of science took work. The parents, doctors, and researchers didn't always agree—among themselves or with each other. But together they endeavored to accelerate the development of new drugs. The parents became citizen scientists, identifying promising new treatments and helping devise experiments. They recorded data about the children and co-authored scientific papers sharing findings. They engaged directly with the FDA at each step of the drug approval process. Along the way, they advanced the radical idea that science must belong to us all. Amy Dockser Marcus shows what happens when a community joins forces with doctors and researchers to try to save children’s lives. Their extraordinary social experiment reveals new pathways for treating disease and conducting research. Science may be forever changed.

This book is about the doing and experiencing of diagnosis in everyday life. Diagnoses are revealed as interactive negotiations rather than as the assigning of diagnostic labels. The authors demonstrate, through detailed discourse analyses, how the diagnostic process depends on power and accountability as expressed through the talk of those engaged in the diagnostic process. The authors also show that diagnostic decisions are not only made by professional experts trained in the art and science of diagnosis, but they can also be made by anyone trying to figure out the nature of everyday problems. Finally, diagnostic reasoning is found to extend beyond typical diagnostic situations, occurring in unexpected places such as written letters of recommendation and talk about the nature of communication. Together, the chapters in this book demonstrate how diagnosis is a communication practice deeply rooted in our culture. The book is interdisciplinary and unusually broad in its focus. The authors come from different experiential scholarly backgrounds. Each of them takes a different look at the impact and nature of the diagnostic process. The diagnoses discussed include autism, Alzheimer’s disease, speech and language disorders, and menopause. The focus is not only on the here and now of the diagnostic interaction, but also on how diagnoses and diagnostic processes change over time. The book can serve as an undergraduate or graduate text for courses offered in various disciplines, including communication, sociology, anthropology, communication disorders, audiology, linguistics, medicine, and disability studies.

Dana Creighton and her mother both were affected by the same inherited cerebellar degeneration, known as ataxia--a loss of control over body movements. Both were treated by a healthcare system that failed them in different ways. Yet their experiences were disparate. Creighton eventually found the right tools to piece together meaning in her life; her mother resisted accepting her condition, in part because doctors repeatedly said nothing was wrong with her. Twenty-five years after her mother's suicide, Creighton's memoir finds striking similarities and differences in their lives and traces a lineage of family trauma. Drawing on research in neuroplasticity, medical records, personal correspondence and genealogy, the author highlights the gap between the lived experience of a debilitating ailment and the impersonal aims of clinicians. She shows how the stories parents tell themselves about living with a genetic disorder influences how they communicate it to their children.