The Silver Lining

The Kidney Trust is providing some relief to families of CKDu patients, looking for a means to sustain themselves and their loved ones:

by Dhaneshi Yyatawara

Ven.Napatawela Dhammananda Thera	S.B. Somipala

Chronic Kidney Disease of unknown etiology, CKDu is very much in the news these days, with statistics formulated by the Presidential Task Force on Chronic Kidney Disease Prevention, indicating that 40,680 people are affected with the debilitating disease mainly in the North Central Province(NCP), some areas of the North Western Province(NWP) and the Uva Province.

The Renal Unit

Researchers are uncertain of the exact number as there could be unreported cases, because screening using the new method is on-going.

The Health Ministry has identified 11 districts - Anuradhapura, Polonnaruwa, Moneragala, Badulla, Matale, Kurunegala, Vavuniya, Mullaitivu, Trincomalee, Ampara and Hambantota, as risk areas.

"The number of patients will change as the screening progresses to more districts," a spokesman for the Presidential Task Force said.

Girandurukotte in the Uva Province stands out with patient management in the District Hospitals. Nearly 3,000 patients have been registered with the District Hospital Renal Unit, with 90% of them from the Uva Province. As Girandurukotte is close to several provinces, patients from the Eastern, Central and North Central Provinces seek treatment at the Renal Unit, according to Dr. Lishanthe Gunaratne, Medical Officer In Charge of the Unit.

Soysa Jayasekara (55), of Galgelanda, Habarawa, Girandurukotte, believed the disease to be a curse from the demons - yaka gahala was what villagers thought.

He succumbed to the complexities of kidney failure, despite successful response to the Continuous Ambulatory Peritoneal Dialysis (CAPD) introduced through the Renal Unit. He died on the morning of February 10 - a day after he spoke to us about the history of CKDu.

Patients waiting for their turn at the Girandurukotte District Hospital

"The first person to die with similar symptoms, as far as my memory goes, was one of my uncles. He was in his late forties and died in the 1980s. He died within three or four months. I was a young lad then," he recollected.

According to him there were several more cases in the village and the villagers thought it was a curse from the demons and many performed black magic, bali'and thovil and sought the help of witch doctors to overcome the disease. "This was the extent to which the disease had spread," he said.

"Years later, when I got similar symptoms, I realised that my uncle and all the others who died with similar symptoms, would have been affected with CKDu," he said. Jayasekara belonged to the second generation of the community that was resettled in Girandurukotte with the Mahaweli Development Project.

CKDu began affecting communities, attracted the attention of the health authorities triggering numerous awareness programs to educate the communities, for nearly two decades, parallel to research carried out locally and internationally. According to statistics, patients are now detected early in the NCP and adjacent regions. In Girandurukotte, people with CKDu detected in categories lower than level 5 (grading of the intensity of the kidney failure). During the initial period, in 2000, people were detected beyond level 5. but now early detection has enabled many patients to receive treatment early.

Since 2001, the hospital conducts screening clinics and awareness programs.

"People need to get over not only the illness. This is a health issue that goes beyond affecting the body. They need support to overcome the problem," consultant nephrologist, Nishantha Nanayakkara said.

He said there were communities living well below the poverty line. Many of them were farmers and the loss of income has created social and economic chaos in their lives.

"We are grouping patients into communities, so that peer group can discuss their problems and find a solution. Being in a group makes them feel strong and empowered," Dr. Nanayakkara said.

"People who have undergone Kidney transplant show tremendous improvement when supported to carry out a livelihood or to be active in a community," Dr. Nanayakkara said.

"A sense of belonging will make patients happy and medicine alone won't help" was the contention of many who came in contact with these kidney patients. New steps such as the CAPD and Patient Societies, the quality of life of these helpless people was gradually improving.

Rather than making them dependent on others or destitute, a small group of village leaders, including Viharadhipathi of the temple in the area set up a Kidney Trust to create sustainable income generating avenues for kidney patients and their families. "These people are not used to being dependent. They were self-sufficient until CKDu affected them," Ven Napatawela Dhammananda Thera, Sanganayake of Uva/Bintenna and Chief Priest of the Girandurukotte Buddhist Centre said.

"There were many locals and foreigners, who understood the difficulties they underwent. Many people have contacted us," he said.

A majority of the patients were armers, descending from resettled families, during the Mahaweli Development program. Today these farmers, cannot cultivate their lands. "We are looking for self- employment ventures to enable these farmers to earn an income.

We held discussions with factory owners who are willing to outsource certain segments of their production line," Ven.Dhammananda Thera said.

"Children give up school, when parents fall ill. They wait to turn 16 or 17 to be employed and help parents to support the family," he said. Secretary to the Trust S.B. Somipala served in the Navy earlier.

To prevent children becoming school dropouts, the Trust has been offeringscholarships for schoolchildren continuously since 2001. "As a result we managed to save the future of some children and as the number of donations are increasing more children are benefited," he explained.

Yet, the biggest problem these people face, the Chief Priest said was the inability to find a donor, as many of the family members are already affected with CKDu, they could not donate a kidney.

The Kidney Trust is concerned about the lack of donors as well. "We are disseminating information that donating a kidney was a meritorious deed," Somipala said.