Women across India, living in rural areas face similar issues: Long working hours, poverty, financial constraints, illiteracy, lack of proper hygiene, unconcerned husbands, and medical complications. Poverty, illiteracy and lack of medical facilities inhibit women from reaching out to the nephrologist in time, thus delaying treatment. Their faith in local quacks proves to be a major hindrance. A vital issue is the marriage of young girls who have been afflicted by the disease. Questions of who will marry them, will they survive, will they concieve? – form an endless list. KWF has started campaigns towards creating awareness amongst these women.
The coronavirus raised its hood in advanced countries in Europe and the United States of America sometime in December 2019. In early March, when travel restrictions were being applied, foreseeing problems in supply of imported medicines and consumables, KWF took a preemptive step to warn patients to stock medicines.
When the Government promoted social distancing, dialysis patients found few city autos on the streets. KWF’s Sejal Jobanputra’s tweets caught media’s attention with Hindustan Times carrying a story on 23rd March with interviews of affected patients. By 24th March, complaints came from other parts of India of patients unable to reach their dialysis centers. The police were strictly following orders, immobilizing patients who needed emergency treatments.
Right Steps to Manage Dialysis And The Journey of a CKD Patient
KWF started its series of educative webinars on different aspects related to kidney disease, with the aim of educating patients, in order to equip them with the right information required to understand the disease, and know how to manage it. The series kick started with its first episode on 22nd August 2020, with a session hosted by our own warrior-caregiver Maryann Manasseh, who has been with us as the Voice of Patients in KWF. Dr. Avinash Ignatius, nephrologist and member of the KWF family gave a brief introduction about the setting up of KWF and its journey so far, highlighting its purpose and aims. The webinar series intends to fulfil the need to continue the activities of KWF in the background of the COVID 19 pandemic, which has put a halt to the educational events that were regularly conducted in various cities.
Our first guest speaker was Dr. Prashant Dheerendra, chief nephrologist of Dharma Kidney Care, Bangalore, a dialysis center known for providing excellent patient care.
Dr. Prashant walked us through the various stages of CKD, starting with diagnosis of the disease to dialysis, and the factors that contribute to maintaining quality of life while on dialysis. A patient will first need to accept the disease, and make certain adjustments in life to accommodate the treatment procedures, in order to live a long, happy and productive life.
Watch our video where Dr. Prashant explains these aspects in detail, to allay your fears and enable you to take the right steps at the right time to lead a positive life with CKD. When you were first told that you have kidney disease, what fears and doubts arose in your mind? Were you confused about the road ahead? Did you know how to prepare yourself to face dialysis? What issues did you encounter once you started dialysis? Questions related to these facets of the journey with CKD were raised by participants from KWF, who had the opportunity to watch the session live. If you have similar doubts and apprehensions about CKD and dialysis, watch the video below for Dr. Prashant’s responses.
In 2013, at the World Congress of Nephrology, the International Society of Nephrology made the vision statement for the world to prevent deaths due to treatable acute kidney injury (AKI). Each year there were 13.3 million reported cases of AKI, with developing countries burdened with approx 11.3 million. Working towards this ambitious project, International Society of Nephrology launched the #0by25 campaign, to reduce preventable deaths from AKI across the world by the year 2025. The aim was to create global strategies for early diagnosis and treatment of AKI among patients with reversible diseases.
This initiative focused on bringing in infrastructure, training and education through need based projects. These were particularly designed to meet the needs of developing countries and disadvantaged populations.
All through its three years of work, while Kidney Warriors Foundation has been helping people diagnosed with kidney disease in various ways, we have consistently believed that being diagnosed with kidney disease is not the end of life. A patient should not stop living, and should not give up, but fight back as a warrior. The best way to do this is to know the disease, catch early signs, and know how to manage it, so that one can live life in the best way possible.
Our Foundation attempts to question patients currently engaged in some kidney treatment to arrive at some conclusions. One can safely lay the blame to low awareness of kidney disease and treatments leading to psychological, financial and sociological aspects in defining this population which needs to be published.
Analytical studies conducted by nephrologists and healthcare show that high sodium intake through consumption of packaged food with preservatives have led to Hypertension that is responsible for most cases of kidney diseases. To curtail and manage early detection nephrologists and Government have launched campaigns, such as, “Salt Satyagraha”, “Ek Chammach Kum” and others to limit intake of sodium and sugar, such that future generations may be saved.
Nutritional Secrets, an offering from KWF is an essential Nutrition and Diet handbook for people in various stages of kidney disease. Diet and medication are inseparable in every health condition. With kidneys failing, the diet’s role gets magnified, as every small change has a corresponding effect on the overall health of the person. This handbook balances these issues. The book has been researched and developed in consultation with senior dietitians and nutritionists from various hospitals of the country. The first part of the book, DIET, explains the necessity for a balanced diet, and the function of each of its components. RECIPES, the latter part, has contributions from patients and caregivers, with easy recipes that a patient can choose from, based on his taste and nutritional requirements. It is a user and patient friendly book written with your health in mind, that will definitely be treasured by kidney patients and nephrologists.
A mother’s journey through her son’s ailment & treatment. Through the battery of tests required for the transplant, she was detected with a tumor. Not one to shy away with such a simple scare as Cancer, she made sure she got fit to Donate.
In this heart-wrenching account Vasundhara Raghavan shares more than that worst nightmare of all – a child being afflicted by a life-threatening condition- she relates a story of instinctive courage. She narrates how her family, instead of letting their circumstances devastate them, summoned every emotional and psychological resource to provide a young boy, and themselves with hope. In their quest for the best cures available, they were guided by many well-wishers, one of them being Dr Akmal, who lent his medical expertise to authenticate the treatments outlined in the book.
This book describes how accidentally at the age of 25, during a routine checkup Shantanu discovers that he suffers from ADPKD, a Kidney disease without a cure. How it affects him mentally to know that he may not live long, as told by his Doctor at that time. How he chooses to initially live in denial but then fight it out, making some avoidable mistakes on the way. Eventually, in spite of a near-death situation, he does conquer the disease to get back to a normal life with good health by the age of 39. The book traverses his journey in these fateful 14 years, where he did not let the disease affect his career or his daily life.
Are you a patient? Are you a caregiver? – then, this is a book that will boost your morale.
Kidney Warriors, is a compilation of brave and inspiring stories, that opens the door to understanding various facets of kidney diseases – medical, social/familial, psychological and economic. The book poignantly bares their thoughts, emotions, struggles, strengths and hopes. Patients can identify with the anecdotes that chronicle experiences of other CKD patients from varied age groups and backgrounds, and how they deal with the challenges posed by kidney disease, their day to day struggles and victories.