The Hindu : Front Page : Helping people come to terms with kidney failure

Online edition of India's National Newspaper
Monday, Oct 15, 2007
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Helping people come to terms with kidney failure

Alladi Jayasri

Every month about 25,000 dialyses are performed in Bangalore
The trust will raise funds to help poor patients

BANGALORE: Dialysis Trust of Karnataka, a support group and network of people with end-stage renal disease (ESRD), that aims at creating awareness about living with kidney failure by “being there” for each other, was launched here on Sunday.

The trust, which started off as a group of patients coming together at the Sagar Apollo Hospital who have not only accepted the reality of ESRD, but are also leading by example to show that dialysis is a mere road hump that one rides over going through life, is now a registered society with dialysis patients from over 40 centres in south Bangalore.

Nephrologist Sanjeev Hiremath, who gave direction and support to the idea, and even proposed that the support group should go beyond the hospital and network all dialysis centres (about 60 in the city), said the best thing to come out of this initiative was that by networking with each other, the dialysis centres would be sharing a common dialysis registry, that would give the exact number of people with ESRD, and what and how much needs to be done for management of the disease, apart from awareness and prevention programmes.

Every month about 25,000 dialyses are performed in the 60-plus centres. This means there are about 6,500 people with renal failure who need kidney transplant. The dialysis trust, whose members have determinedly said “no” to transplants, hopes to use this database to speak up for dialysis as opposed to transplants, particularly unrelated renal transplants. They will support each other, and advocate dialysis, work with hospitals, NGOs, and insurance and healthcare sector’s stakeholders to make dialysis cheaper, and in some cases even fund patients who cannot afford dialysis, let alone transplant.

Poornima Vyasulu, an active member of the trust, who was diagnosed with kidney failure four years ago, was shattered, and went into depression, making her will and virtually “counting the days till the inevitable end was to come.” But after her first dialysis, Dr. Vyasulu learnt that “there is life after kidney failure — with dialysis.”

Maharaja Acharya, also a dialysis patient, is the chairperson of the trust.

He said fund-raising would be one of the objectives of the trust to help poor patients.

The panel discussion that followed the launch of the trust saw social workers and counsellors and dieticians and nephrologists speak of the changes that diagnosis of ESRD brings about in the patient and the family, and how much counselling and family support can help in accepting the disease.

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