While getting clinical trials down in western countries seems the road forward, we have found great hesitancy for our people in India to get experimental. To make patients in the kidney community understand the true value of such studies, a special session was held with Dr Arvind Canchi.
Mayank Singhal was diagnosed with CKD as a result of Alport Syndrome at a young age, when he was happy and carefree, and full of dreams for a bright future and a career. The diagnosis and treatment that followed put an end to his dreams and hopes. Mayank had to start peritoneal dialysis in July 2015, eight years after his diagnosis. This was the best option when facilities for hemodialysis were limited in the hilly region in Dehradun where he lived, and when initial attempts by doctors to create a fistula for him failed.
For people with CKD, physical activity is imperative in order to overcome the manifold side effects of dialysis and medications. Although walking is considered the best form of exercise, it can be supported by other forms for better outcomes. Yoga is one such form that can be practiced by people of all age groups for greater flexibility, better muscle strength, improved bone strength, increased blood flow, improved heart rate, and control of blood pressure and blood sugar. It also helps in relaxation which, in effect, improves sleep. Responding to the need expressed by several members of KWF to include meditation and relaxation as part of a patient’s routine, Saurabh Agrawal, a certified yoga instructor, volunteered to conduct yoga sessions for the members.
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.
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.
