Life caught me by surprise when our youngest son was born with a birth defect that launched our family into the world of surgeries, and treatments. After experiencing the management of chronic care for our child firsthand, I realized how important it is to share personal stories and experiences. It enables empathy and a deeper understanding and appreciation of what patients and families go through. Autobiographical accounts of patients and families are still very limited. We need more people to come forward and share their own patient/family experiences in order to promote the betterment of healthcare and healing through relating with others and learning from others’ experiences.
I wrote...
The 5000th Baby: A Parent's Perspective and Journey through the First Year of Life
A story of the first year of life of a baby who was born with a rare birth defect which occurs with a frequency of one in approximately 5000 babies born. A vivid description of the journey of a family that was shocked and overwhelmed by the fear of the unknown, and the perils of the surgeries and treatments that would follow. The story is a detailed account of the medical aspects (surgeries, recoveries, complications, infections, and treatment regimens) while often encountering a “not so friendly” medical system at times as well as dealing with psycho-social aspects of life.
The book provides valuable tips and suggestions so that others may benefit from the author’s experience. Learn about the journey with its trials and tribulations as experienced through the patient / parent’s perspective and appreciate the blessing of a normally functioning healthy human body.
This is an enlightening memoir recounting the story and journey of experiencing and recovering from a stroke. I love this book because it uniquely combines perspectives of the author being a researcher (neuroscientist), patient (experiencing the stroke), and just a common person with a normal life - which was turned upside down by the stroke. The author walks you through the arduous physical and emotional roller coaster of recovery, a few neurons at a time. The human brain candidly expressing what happened to itself, is a marvelously fascinating concept that you get to learn by reading this book.
"Transformative...[Taylor's] experience...will shatter [your] own perception of the world."-ABC News
The astonishing New York Times bestseller that chronicles how a brain scientist's own stroke led to enlightenment
On December 10, 1996, Jill Bolte Taylor, a thirty-seven- year-old Harvard-trained brain scientist experienced a massive stroke in the left hemisphere of her brain. As she observed her mind deteriorate to the point that she could not walk, talk, read, write, or recall any of her life-all within four hours-Taylor alternated between the euphoria of the intuitive and kinesthetic right brain, in which she felt a sense of complete well-being and peace, and…
Imagine being a medical school student in the best of health and full of spirit and ambition, and suddenly being engulfed by a strange and mysterious illness that even the best of doctors in the most renowned hospitals are unable to appropriately diagnose, let alone treat. This chilling story of a doctor who literally chases his own cure is a great example of the much-needed patient advocacy that may often be required to diagnose and treat rare and complex conditions effectively. The author’s passion for finding the underlying cause of his disease (Castleman’s disease) and experimenting with innovative unlikely combinations of drug therapies makes his story memorable and truly inspiring.
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…
Every once in a great while, something remarkable happens and lets us learn about life in a different dimension than what we are used to. This book is penned by an author who is a neurosurgeon and who had a near-death experience upon falling critically ill with meningitis. I love this book because of the author’s ability to use his profound knowledge gained by his own near-death experience to unravel the deepest and most insightful meaning of life and its secrets. The lessons learned from the author’s own experience of the fusion of the spiritual and scientific self is well explained. The book is also unique from a point of view of the author being vulnerable enough to reveal his personal life and how his past played a role in the experiences during the 7-day coma and recovery from it.
Internationally acclaimed neurosurgeon Dr Eben Alexander always considered himself a man of science. His unwavering belief in evidence-based medicine fuelled a career in the top medical institutions of the world. But all this was set to change. One morning in 2008 he fell into a coma after suffering a rare form of bacterial meningitis. Scans of his brain revealed massive damage. Death was deemed the most likely outcome. As his family prepared themselves for the worst, something miraculous happened. Dr Alexander's brain went from near total inactivity to awakening. He made a full recovery but he was never the same.…
Breast cancer has become ubiquitously one of the most common and dreaded cancers among women. Through this book, the author authentically and innovatively advocates for patients like her, who are diagnosed with breast cancer. She describes her journey in detail in an attempt to guide and advise others on how to deal with and manage life in the face of such a deadly diagnosis. While patients may be overwhelmed by the medical management aspects of the disease, the author reminds us to keep the human and psychological aspects in mind as a patient is after all a human being with emotions at the core.
A definitive and approachable guide to life during, and after, breast cancer
The biggest risk factor for breast cancer is simply being a woman. Madhulika Sikka's A Breast Cancer Alphabet offers a new way to live with and plan past the hardest diagnosis that most women will ever receive: a personal, practical, and deeply informative look at the road from diagnosis to treatment and beyond.
What Madhulika Sikka didn't foresee when initially diagnosed, and what this book brings to life so vividly, are the unexpected and minute challenges that make navigating the world of breast cancer all the trickier. A…
This book is near and dear to me because of the topic it is based on. Anorectal malformation is a rare congenital defect that affects one in 5000 babies born. The book does a great job of bringing to light the real-life stories and experiences of patients and their families as they learn to navigate the healthcare system while aiming for the best outcome for their babies. The book gives a platform for raising awareness of birth defects such as anorectal malformations and tries to overcome the stigma associated with them. The book is a great compilation of stories of patients with anorectal malformations and serves as a great resource for other patients faced with a similar diagnosis.
This book describes with raw honesty and deep emotion the journeys that families go on when their child is born with an Imperforate Anus (IA) also known as Anorectal Malformation (ARM). It is a rare congenital condition that affects ONE in 5000 births which is very rarely talked about or known in the wider community. It reveals the many difficulties both emotionally and physically that babies, children and adults living with IA/ARM endure. It is a book filled with love, courage, resilience and hope. It shows the importance of having access to good information and medical staff who are compassionate…
I'm the oldest granddaughter of Leora, who lost three sons during WWII. To learn what happened to them, I studied casualty and missing aircraft reports, missions reports, and read unit histories. I’ve corresponded with veterans who knew one of the brothers, who witnessed the bomber hit the water off New Guinea, and who accompanied one brother’s body home. I’m still in contact with the family members of two crew members on the bomber. The companion book, Leora’s Letters, is the family story of the five Wilson brothers who served, but only two came home.
The day the second atomic bomb was dropped, Clabe and Leora Wilson’s postman brought a telegram to their acreage near Perry, Iowa. One son was already in the U.S. Navy before Pearl Harbor had been attacked. Four more sons worked with their father, tenant farmers near Minburn until, one by one; all five sons were serving their country in the military–two in the Navy and three as Army Air Force pilots.
Only two sons came home.
Leora’s Letters is the compelling true account of a woman whose most tender hopes were disrupted by great losses. Yet she lived out four more decades with hope and resilience.
The day the second atomic bomb was dropped, Clabe and Leora Wilson’s postman brought a telegram to their acreage near Perry, Iowa. One son was already in the U.S. Navy before Pearl Harbor had been attacked. Four more sons worked with their father, tenant farmers near Minburn until, one by one, all five sons were serving their country in the military. The oldest son re-enlisted in the Navy. The younger three became U.S. Army Air Force pilots. As the family optimist, Leora wrote hundreds of letters, among all her regular chores, dispensing news and keeping up the morale of the…
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