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Jenny's Journey with Cystic Fibrosis by Julie Sunderland Pdf
This is the true story of Jennifer Sunderland and her experiences with an incurable lung disease. Her struggles and triumphs are documented as they happened year by year. Her personal relationship with Jesus Christ gave her the hope and strength to continue on.
Andrew Bush,Margarida D. Amaral,Jane C. Davies,Nicholas J. Simmonds,Jennifer L. Taylor-Cousar,Sarath C. Ranganathan
Author : Andrew Bush,Margarida D. Amaral,Jane C. Davies,Nicholas J. Simmonds,Jennifer L. Taylor-Cousar,Sarath C. Ranganathan Publisher : CRC Press Page : 747 pages File Size : 46,5 Mb Release : 2023-11-20 Category : Medical ISBN : 9781000988536
Hodson and Geddes' Cystic Fibrosis by Andrew Bush,Margarida D. Amaral,Jane C. Davies,Nicholas J. Simmonds,Jennifer L. Taylor-Cousar,Sarath C. Ranganathan Pdf
Cystic Fibrosis has seen dramatic advances in treatment since the last edition, including targeted cystic fibrosis transmembrane conductance regulator (CFTR) protein modulators for most CFTR gene abnormalities. This new fifth edition is an update and expansion of the rapid clinical and scientific advances in improving prognosis, and the impact of COVID-19, all of which has transformed conventional models of care. It covers basic science, such as how detailed understanding of the biology of the CFTR gene and protein has led to novel and beneficial therapies, as well as all aspects of clinical management in high-, middle- and low-income settings and the voices of individuals with CF from across the world. It will be a useful reference for clinicians, including all levels of trainees, across the whole multidisciplinary team, scientists and students. Key Features • Follows an appealing organization of chapters, by developing fundamental knowledge of the reader before moving on to more complex or developing topics. • Presents a comprehensive, authoritative and up-to-date text, integrating fundamental science and clinical aspects of cystic fibrosis providing an attractive read for clinicians, trainee doctors and scientists. • Draws on global expertise and reflects best evidence-based practice from experts conducting cutting-edge clinical and basic science research from around the world.
When you were five days old, you had a routine heel prick test and we thought nothing of it. A couple of busy weeks later, I received an unexpected phone call. We were to attend the hospital for further investigations into the heel prick test result. That phone call brought with it some devastating news. You - our precious baby, our baby that we had waited so long for - had cystic fibrosis. Cystic Fibrosis. Daddy and I didn't even know that we were carriers of the faulty gene, in fact we knew very little about the condition at all. Our beautiful, perfect little son! What had we done to you?Reeling from the shock and grief, we struggled at first to accept this new reality. Nothing made sense anymore, everything had changed. With so much to take on board, so much to learn and understand in a short space of time, we felt completely overwhelmed. Until we realised that not everything had changed. In fact, nothing much had changed at all. You were still our wonderful, amazing, funny, charming, loving, smiling, happy, uplifting little boy. Now we just had to learn how to deal with this diagnosis and protect your health as you grew up. This is the story of our journey together as a family so far. Our journey through the grieving process and out the other side to acceptance and the embracing of life itself. Along the way we have learnt so much about cystic fibrosis; we have learnt how it affects those with the condition, their life's challenges and their potential life expectancy. But we have chosen to focus our energies on the positives, and on hope. Hope in the scientists and researchers who are working hard on more targeted treatments for CF. Hope for a cure. Hope for your future.But, above all of that, we focus on you. You are the centre of our universe and in everything we do, we think of you first. Through you, our eyes are now open to the fact that all living things will die. We are mortal. We will die. Every last one of us. And no-one knows when. Of course we already knew that, but now we embrace it and we feel liberated. We are aware. We are no longer sleepwalking through our own lives. It is a good thing; a positive thing. And this is a positive story. Even bad news has a silver lining, and you are our silver lining. We will have a wonderful journey together, whatever it may bring. Life is a game, let's enjoy it!We could never have been prepared for this diagnosis to happen to us, but know this: we love you with all our hearts and we would not change you for the world. Of course, if we could take CF away from you, we would. But we can't. Let's hope and pray that the scientists can. And in the meantime, we will live life to the fullest and take nothing for granted, because life is precious and we have been gifted that fresh awareness through you. You are only two years old, yet you have already taught us so much. You are teaching us fresh approaches to, and perspectives on, life. Take chances! Experience everything! Don't be so serious - laugh and laugh hard. It's Just Our New Normal is the story of how we are blossoming as a family; taking the best care of you that we can and then putting cystic fibrosis to the back of our minds so that we can enjoy our day together. I hope that anyone facing a similar diagnosis may find some comfort in my words. We don't know what the future holds, but we have today. And today is good. All proceeds from the sale of this book will be donated to the Cystic Fibrosis Trust and The Butterfly Trust.
Author : Frank J. Sileo,Carol S. Potter Publisher : American Psychological Association Page : 272 pages File Size : 40,5 Mb Release : 2021-03-09 Category : Family & Relationships ISBN : 9781433833823
When Your Child Has a Chronic Medical Illness by Frank J. Sileo,Carol S. Potter Pdf
Silver Medal for Parenting in the Independent Publishers Awards "This is an outstanding book that addresses the challenges of chronic disease in children from multiple viewpoints with a great deal of practical knowledge. Given that Diabetes is one of the most common chronic diseases of childhood, this work will serve to guide families in navigating the sometimes challenging journey to ensure the best possible outcomes for all." - Robert Gabbay, MD, PhD, Chief Scientific and Medical Officer for the American Diabetes Association Written by leading mental health professionals, this warm and accessible parenting book for children with chronic illnesses offers clear, practical guidance for all aspects of the journey. When you’re focused on ensuring your child gets the best possible treatments for their symptoms, it’s easy to overlook or dismiss the impact the illness can have on your relationships and emotions. This book places your psychological well-being front and center, so you can be the best caregiver possible for your child.
There Are No Alligators in Heaven! by Donna Codell,Evan Michael Codell,Jennifer Hale Pdf
Using Jennifer Hale's own writings and images as well as interviews with Jennifer's parents, Evan Michael Codell and Donna Codell, presents the life and experiences of Jennifer Hale and her family as Jennifer lived with cystic fibrosis.
Jenny Pitman: The Autobiography by Jenny Pitman Pdf
Jenny Pitman's success has been won against the odds. An outsider in the privileged world of racing, she has nevertheless turned herself into one of the most successful trainers in Britain today. And as a woman in a male-dominated profession, she has been forced to work doubly hard for her achievements. Jenny's love of horses has dominated her life. Born on a modest Leicestershire farm without gas, electricity or running water, she joined a racing yard at the age of fifteen. While still in her teens she married jockey Richard Pitman, and together they set up a stable. Before long, Jenny became one of the very first women to be granted a professional licence to train horses. Despite the subsequent break-up of her marriage and financial hardship, Jenny soon managed to establish herself in her own right as a fully fledged trainer. Since then, horses such as Garrison Savannah and Burrough Hill Lad have etched the Pitman name deeply in the record books. Jenny has trained the winners of all five major Nationals and two Cheltenham Gold Cups. With Corbiere in 1983 Jenny became the first woman trainer to win the Grand National - and she is still the only one to have done so. In 1993 her horse Esha Ness won the 'National that never was'. Two years later the notoriously difficult horse Royal Athlete won her this prestigious race for a second time. The success of Jenny's Lambourn stables has been very much a family affair. Like his father, Jenny's son Mark also became a successful jockey. He rode many of her horses to victory, and on retiring as a jockey worked as assistant trainer to his mother before setting up on his own. In 1997, after an eighteen-year engagement, Jenny married her long-term companion, David Stait. In the 1998 New Year's Honours list she was awarded the OBE. Her fierce will to succeed, her tenacity and her courage to fight for what she believes in, both professionally and personally - these are the foundations on which Jenny Pitman has built her life. Her frank and lively autobiography reflects this spirit.
Author : Jennifer A. Pryor,Ammani S Prasad Publisher : Elsevier Health Sciences Page : 648 pages File Size : 54,5 Mb Release : 2008-03-06 Category : Medical ISBN : 9780702039744
Physiotherapy for Respiratory and Cardiac Problems by Jennifer A. Pryor,Ammani S Prasad Pdf
Now in it’s fourth edition, Physiotherapy for Respiratory and Cardiac Problems continues to be an essential textbook and reference source for undergraduate and postgraduate students, and for the clinician working with patients with cardiac and respiratory problems. It strengths lie in integrating the evidence with clinical practice and in covering the whole patient lifespan - infants, children, adolescents and adults. new chapters on: critical care, surgery, and psychological aspects of care expanded evidence for clinical practice case studies multi-contributed chapters written by internationally recognised experts extensively revised text with new illustrations and photographs comprehensive reference lists which directs the reader to further sources of information Part of the Physiotherapy Essentials series - core textbooks for both students and lecturers Online image bank now available! Log on to http://evolve.elsevier.com/Pryor/physiotherapy and type in your unique pincode for access to over 300 downloadable images
National Book Critics Circle Award Finalist A New York Times Notable Book of the Year "Transcendently disobedient, the most existence-affirming and iconoclastic defense a writer could mount against her own extinction." --Heidi Julavits, New York Times Book Review From "one of the great anomalies of contemporary literature" (The New York Times Magazine) comes a breathtaking memoir about terminal cancer and the author's relationship with Nobel Prize winner Doris Lessing. In July 2014, Jenny Diski was diagnosed with inoperable lung cancer and given "two or three years" to live. She didn't know how to react. All responses felt scripted, as if she were acting out her part. To find the response that felt wholly her own, she had to face the clichés and try to write about it. And there was another story to write, one she had not yet told: that of being taken in at age fifteen by the author Doris Lessing, and the subsequent fifty years of their complex relationship. In the pages of the London Review of Books, to which Diski contributed for the last quarter century, she unraveled her history with Lessing: the fairy-tale rescue as a teenager, the difficulties of being absorbed into an unfamiliar family, the modeling of a literary life. Swooping from one memory to the next--alighting on the hysterical battlefield of her parental home, her expulsion from school, the drug-taking twenty-something in and out of psychiatric hospitals--and telling all through the lens of living with terminal cancer, through what she knows will be her final months, Diski paints a portrait of two extraordinary writers--Lessing and herself. From a wholly original thinker comes a book like no other: a cerebral, witty, dazzlingly candid masterpiece about an uneasy relationship; about memory and writing, ingratitude and anger; about living with illness and facing death.
Essential Nursing Care for Children and Young People by Chris Thurston Pdf
Essential Nursing Care for Children and Young People is the definitive guide for all nursing and healthcare students and professionals caring for children and young people. Designed to meet the 2010 NMC competency standards for pre-registration nurses, the textbook supports you through the process of caring for children and young people with varied needs and conditions across all healthcare settings. A practical, patient-centred approach is taken throughout, with the ‘voices’ of children, their families and their carers used to tie theoretical knowledge to the real experience of providing care. The inclusion of the latest research and health and social care policies ensures that you are fully in line with the latest clinical practice, whilst the book’s activities and exercises allow you to regularly check your understanding and develop confidence during your journey from student to nursing professional. Main features: Course-Focused Approach – pedagogy and content designed specifically for all three years of the child nursing degree programme. Contemporary Content – research note features and policy integrated throughout to give you instant access to the latest evidence-based practice. Illustrated Throughout – this highly accessible text regularly uses pictures and diagrams to highlight key issues. Voices – include authentic experiences of children, young people, parents, carers and professionals to help develop a patient-focused attitude to care. Pertinent A&P – includes coverage of all relevant anatomy and physiology for child and young person nursing courses. Practice Guidelines – provide practical guidance on everyday procedures for your quick reference. Activities and Answers – allow you to check your knowledge and build confidence. Specialist Authors – each chapter is written by leading experts in each area. Essential Nursing Care for Children and Young People is the ideal main textbook for all undergraduate child and young person nursing students, as well as professionals wanting to ensure they are using the latest practice. This text is also relevant to any student or professional involved in the health and social care of children and young adults.
47 / a Life with Cystic Fibrosis by Simon Wiffen Pdf
47 / A Life With Cystic Fibrosis is a book of beautiful, intimate portraits exploring the reality of living with cystic fibrosis. Each subject offers an insight into their attitudes to life and their condition up to and beyond the median predicted survival rate of 47. Cystic fibrosis (CF) is a genetic condition that affects around 10,400 people in the UK. It affects the lungs, digestive system and other organs in the body. While CF requires a complex and lifelong combination of medication, treatments and physiotherapy there is currently no cure. It can be an incredibly isolating illness as due to cross infection, people with CF aren't allowed to meet in person. It's a life-limiting condition and the average life expectancy is currently 47 years old. With 47 / A Life With Cystic Fibrosis, Simon Wiffen set out to study how this number affects the attitudes and opinions of people diagnosed with CF at various stages of their journey. Over the course of a year he visited each person in this book, shot their portrait and chatted to them about their life, their attitude to the condition and their hopes and dreams for the future. He was fascinated to know whether these changed as people approached (and passed) 47. Each portrait is shot in the same style, with the same lighting and presented in black and white. This approach was chosen to remove the distraction and focus on the individual in the picture and their unique experience. CF is a complex, cruel and often misunderstood condition that requires lifelong care while not always having visible symptoms. As such it can be difficult for people to fully understand the severity of the condition. Life with CF requires a daily routine of medicine, treatments and physiotherapy along with a progressive loss of lung function that can often result in a need for organ transplants. It brings a combination of lifelong challenges that can produce incredibly strong and resilient personalities who have to face the realities of mortality every day. Anne Shinkwin, Director of Fundraising at The Cystic Fibrosis Trust said: "Simon's intimate portraits give a unique insight into the lives of some of the 10,400 people in the UK living with cystic fibrosis (CF). This book beautifully captures multiple voices and reveals the reality of living with a condition that shortens life. Although there is no cure for CF, advances in research are helping people to live longer. However, as these stories attest, CF remains a daily challenge." 47 / A Life With Cystic Fibrosis was originally published in paperback to 5 star reviews following a hugely successful Kickstarter campaign that smashed its target in just 8 hours. The book has been featured on BBC1 and in the Daily Express. In 2020 Simon was awarded the Unsung Hero Award at the AP Awards in recognition of his work on the project. 25% of profits from this book will go to support the incredible work that the Cystic Fibrosis Trust do every day to support those affected by CF and to help work towards a cure. Thank you. You can read more about this project at https://www.simonwiffenphotography.co.uk/projects/47-a-life-with-cystic-fibrosis/
Chaya's Angels by Chaya Ben Baruch,Elaine Feuer Pdf
When Chaya Ben Baruch gave birth to her sixth child, a son with Down syndrome, she led her family on a spiritual journey, moving from Alaska to Israel, and adopting more children with special needs, on the way. Whether she’s watching her son with Downs marry her adopted daughter with Downs, or fighting for the rights of all special needs children, life is never dull. Chaya even managed to find time to donate a kidney, leaving everyone to wonder, “What’s next?” There are few people who have Chaya’s combination of character traits: brilliance; bravery; altruism; honesty; and her ability to love, whether it's her own family or other people’s children. It is our aspiration for the reader to appreciate the uniqueness and joy that Chaya and her husband, Yisroel, have experienced as parents of children with Downs, and to open the hearts of people, across the globe. Ghandi wrote: “A nation’s greatness is measured by how it treats its weakest.” Join Chaya and her family on their enchanting odyssey. The world needs this heart-rending story, more than ever! Ariella Bracha Waldinger’s Review: “Every pregnant woman fears the possibility of birthing a child with special needs, but Chaya Ben Baruch, in her spiritually uplifting book, Chaya’s Angels teaches the reader the true beauty of raising these special souls. Chaya’s book allows the stereotypical belief of Downs babies to crumble: she removes all the negative labels attached to them; depicting their true beauty and inner light. Chaya takes the reader on an epic journey into the personal lives of she and her husband, as they dive into the unchartered waters of raising multiple Down syndrome babies. Gifted with an overflowing love and a passion to meets the needs of these babies, Chaya and her husband love these children unconditionally. They band together, through love and devotion, to give these children exactly what they need to thrive. As a result of reading Chaya’s book, I learned key information and extensive details about the demands of parenting special needs children. I also learned the rich rewards bestowed upon the brave of heart, who dare to embrace this difficult task. Anyone who has an interest in reading an amazing story of inspiration, or is curious about what it takes to raise babies and children with Down syndrome, will benefit from reading Chaya’s Angels. This book is a powerful contribution to children and adults with special needs, giving the reader a deeper understanding of the joys and rewards of life with these remarkable individuals.” Shira Yehudit’s Review: “Chaya’s Angels is an honest, no-holds-barred account of the life of an incredible woman, who has devoted her life to rescuing and caring for special needs children – not in some cold, clinical, institution, but in her home, and in her heart. Chaya makes no bones about sharing the trials and tribulations, the hardships and heartache of caring for and bringing up these special children – and sometimes losing them. But most of all, “Chaya’s Angels” shows us, in a vivid, personal language that speaks from the heart, the joy of having a special needs child in our lives, as part of our family. Chaya lets us feel the pure love that these children radiate to those around them, and helps us to understand that these children really are just that - special. And if this book does nothing more than persuade just one family to think twice about giving away their newborn special needs baby - for that, it was worth writing. But “Chaya’s Angels” is a very powerful, moving book, and I believe it will do much, much more than that…”
