A wait for death: The human cost of Uddanam Nephropathy, a kidney disease in AP

Over the last two decades, the state’s Uddanam region has been gripped by a mysterious disease with no potential cure, ruining thousands of lives.

Delve Health

P Bairagi has many tales to tell. Once employed with the Indian Army, the 65-year-old talks about how he has served the country from ‘Kashmir to Kanyakumari’ while working with the 8th Engineer Regiment and 62nd Field Company.

“I was even part of the team that helped erect the Buddha statue in the Hussain Sagar lake in Hyderabad during Chief Minister N T Rama Rao’s tenure,” he narrates.

All that, however, is in the past. Today, he gasps for breath when he speaks and his hands shake violently as he stretches his arms out to show the puncture marks caused during dialysis.

“Both my kidneys are gone. Even if you swallow hundreds of tablets it doesn’t change. Dialysis helps. If that machine works, my life continues. They need to keep removing the water from my body since I can’t get it out any other way. I can’t even pass urine,” he says, sitting outside the Community Health Centre (CHC) in Sompeta in Andhra Pradesh’s Srikakulam district.



Bairagi (Right)

The state-run dialysis centre in Sompeta, tucked away behind the CHC, leaves a haunting imprint on one’s mind – a double door opens to reveal a packed room with several beds lined up on each side with patients. Doctors and nurses scurry about even as many writhe in pain caused during the process of dialysis.

The sight is similar at almost all state-run dialysis centres in the district’s Uddanam region, which has been gripped by a mysterious disease over the last two decades, with no potential cure.

Uddanam Nephropathy, is a chronic kidney disease, which has been affecting people in the mandals of Kaviti, Sompeta, Kanchili, Itchapuram, Palasa and Vajrapukotturu. Over thousands of people have been estimated to have succumbed to it over the years. No matter which village or town one visits in this area, locals can easily name several people they know suffering from the disease.



Dialysis centre in Sompeta

Locals say that the disease spares no one – both young and old have been diagnosed with it. With no cure, victims often just resign to their fate, waiting for an eventual death.

“Water and salt are our enemy. If those levels increase, we can’t sit, stand or sleep. In 24 hours, we can only drink 1 litre of water. We even need to measure the water that goes into our tea. We can’t sleep. I can sleep today because dialysis has just happened. Again for the next few days, I can’t sleep. I used to be able to lift 120 kg. What’s the use now? I can’t even pluck a blade of grass,” Bairagi says, adding, “At least I’m an old man. What about the future of the young men and women and even children who get affected by this disease?”

What is Uddanam Nephropathy?

Nephropathy is a broad term used to describe kidney disease or damage that may lead to kidney failure. It is considered a progressive disease, which means that the kidneys are rendered less effective over time.

In Uddanam, the disease mysteriously began surfacing in the 1990s, affecting over 30,000 people in the area. While there are no unanimous figures available between officials and activists, it is estimated that between 2,000 and 4,000 people have died due to the disease over the last two decades. The World Health Organization points out that this is one of the three regions in the world with the highest concentration of chronic kidney disease, after Sri Lanka and Nicaragua.

Despite this, the cause of the disease or a cure is yet to be scientifically established.

A study by a group of researchers in 2011 found that “the presence of phenols and mercury in drinking water (in the region) was found to be very high... Phenols and mercury, being very toxic in their characteristic nature, are bio-accumulative. Hence these waters are found not suitable for potable purposes.” However, the study could not conclusively state that water was the sole reason for the prevalence of the disease.

In 2016, a study conducted by a central team from the Indian Council of Medical Research (ICMR) along with researchers of Harvard University, Andhra Medical College, Bhabha Atomic Research Centre (BARC) and NTR University of Health Sciences pinpointed “excessive levels of silica in water” as the cause after a preliminary round of examination. The ICMR research, however, could not be pursued further due to a fund crunch.

Meanwhile, another two-member committee from Harvard University found evidence to suggest that genetic predisposition could be the reason for nephropathy. Either way, studies remain inconclusive and researchers continue to look for the exact cause of the disease.

While authorities point out that they have set up several dialysis centres and are even operating mobile units, locals and activists point out that this is just mitigation and addressing the issue will require conducting more detailed studies to ascertain the cause and cure of the nephropathy.

Speaking to TNM, Dr Jeeviteswara Rao Duvvada from the Uttrandhra Charcha Vedika, says, “The people who are presently undergoing treatment are just the tip of the iceberg. There may be many more who are affected by the disease but it is yet to manifest itself to an extent where they feel the effects physically.”

Life with the disease

Even as various experts attempt to study the disease, Uddanam Nephropathy has ruined thousands of lives in the region. Those suffering from the disease experience swelling, fatigue and breathlessness, leaving them with no choice but to give up work and stay at home.

“They can’t work so there is no income, but what can we do? We often have to depend on others like our relatives to be the breadwinner for the family,” says Sangeetha, as she waits for her husband to finish his dialysis at the CHC in Sompeta. Her 45-year-old husband has been suffering for the past few years and has had to stop working. The couple depends on her husband’s brother to meet their daily needs.

Sangeetha has no choice but to be hopeful and points out that even though her husband is getting better, their situation remains precarious.

Sixty-year-old Bhima Rao says that he has been unable to work since he was diagnosed with Uddanam Nephropathy three years ago. Sitting outside his one-bedroom house in Amalapadu village, barely two km away from the state’s coast, Rao says, “Forget work, we can’t even stand in the sun for too long. We have no strength and no appetite either. I used to be an agricultural worker, helping in coconut and cashew plantations.”

However, for the last two years, Rao, who lives with his brother, says that his life has revolved around catching a bus to Palasa town for dialysis twice a week.

“I have two sons who have migrated and do labour work to send money home,” he explains, adding, “Some people told us that it is the water that causes the disease. We drink only mineral water and use the same for cooking. We use the bore water only for bathing and other domestic use.”

While Rao gets a pension of Rs 2,500 which is soon going to increase by another Rs 1,000, he says that most of the money goes towards his treatment so he can stay alive. “While dialysis is free, we still spend around Rs 2,000 for our medicines and another Rs 1,200 for an injection 2-3 times a month. I have nothing left for my livelihood,” he adds.

The villages are also still reeling from the effects of Cyclone Titli, which hit the state in October last year. Several coconut and cashew plantations still lay in ruins in and around the villages. Most locals cannot even afford to clear them out.

“We got some compensation for the damage but it is not enough. To clean up the area and start again, many of us need money and even then, these trees take at least 15 to 20 years to grow back. Our future is still uncertain. All political leaders have come here and made tall promises, but no one has actually provided any help,” one local rues.

The same neighbourhood has over 10 people suffering from Uddanam Nephropathy. With no one knowing why, locals have completely stopped consuming groundwater since that is one of the suspected causes. There is a water purification plant in the village where all locals buy water for drinking and cooking purposes.

Ironically, the family of Krishna Rao, the operator of the purification plant, has not been spared from the grip of the disease either. In September 2018, Krishna lost his mother Savithri (Chelamma) who succumbed to the disease after fighting it for nearly a decade.

“In 2008, we went to Vizag and conducted a test when she was repeatedly falling sick. Since then, she was on medication. She was undergoing dialysis two to three times a week, over the last four years,” he says.

“From the moment we got to know, we started a course of medicines that the doctor prescribed, but there was nothing else we could do. She just kept getting progressively worse. Once it strikes, we just resign ourselves to our fate,” he adds.

With no knowledge on the cause or the cure for the disease, sharing expertise across disciplines and countries to accelerate knowledge dissemination, guide the research agenda and help establish its causes is the need of the hour, WHO noted in a bulletin in 2017.

“They should also prioritise the provision of safe drinking water and food in affected areas … until researchers have established the exact cause of this chronic disease. Paramedical personnel trained in renal care, as well as social workers, should also provide social and psychological support to patients, families and communities. All these interventions should be regularly evaluated to assess their impact and adapt them if needed … If policy-makers do not undertake such steps until a cause is established, people of Uddanam are potentially more at risk of acquiring the disease and patients already having chronic kidney disease of unknown etimology will be at risk of death,” the bulletin states.

But northern Andhra being one of the most neglected areas in the state and the country given the political apathy shown towards the region, Dr Jeeviteswara has little hope of the situation improving.

“Every politician who gets elected sleeps for four and a half years and wakes up just ahead of the polls. What are we supposed to do? If the same thing happened in Guntur, Amaravati or Krishna district, would it be met with the same apathy?” he asks.

(All photos by Nitin B. and Shilpa Ranipeta)