When 80-year-old Dr S L Kate,emeritus medical scientist,is not visiting his patients at the sickle cell dawakhana at Roshmal Budruk in Nandurbar district of Maharashtra,you can find him 600 km away in a small room stacked with research papers and an array of test tubes at the Sane Guruji Hospital in Pune.
This is my passion and I hope to help prevent sickle-cell anaemia, says Kate,who has worked for more than five decades identifying the disease,detecting persons who are carriers and sufferers and pleading with successive governments to set up treatment units for them.
Sickle-cell anaemia,a genetic disease,is highly prevalent in the tribal population. It is a serious disorder in which the body makes sickle-shaped red blood cells. Sickle-cells contain abnormal haemoglobin called sickle hemoglobin which causes cells to develop a sickle,or crescent,shape. Sickle cells are stiff and sticky. They tend to block blood flow in the blood vessels. This leads to pain,infection and organ damage, says Kate.
Anaemia,intermittent jaundice,severe joint pains and recurrent infections are among the symptoms of the disease. In the absence of a cure,most of the sickle-cell patients lead a miserable and short life. Gujarat is among the few states to have started a sickle-cell anaemia control programme while in Maharashtra,concerted efforts have yet to be made. Yet,Kate,way back in 1972,joined a team of Russian anthropologists to study tribal communities such as Bhils and Pawaras in Dhule district of Maharashtra. He was then a lecturer at Punes B J Medical College and would visit these areas during his holidays. There,he would screen the population of tribals in Nandurbar,Gadchiroli,Amravati,Dhule,Nashik,Thane and Raigad,collecting data and finding a high prevalence of this gene among tribal populations.
His efforts led the state to initiate a tribal health research project in 1989 and the Indian Council of Medical Research sanctioned another project on genetic and pre-marriage counselling from 1992 to 97. However,it was only when Kate joined late Dr S T alias Dada Gujar at the Maharashtra Arogya Mandal at Hadapsar in Pune to provide better health care to the poor and the underprivileged that a community centre for patients of sickle-cell anaemia was set up at Nandurbar.
According to our surveys,the estimated number of persons suffering from sickle-cell anaemia is nearly 2.5 lakh across Maharashtra, he says. By 2011,of the total population of nearly 16 lakh in Nandurbar district,around a lakh were screened and 22.5 per cent (about 28,919) were found to be carriers of the disease while 1 per cent (1,360) were estimated to be sufferers of sickle-cell anaemia.
One of the typical symptoms experienced by most of the patients is known as Sickle-Cell Crisis. Whenever there is increased demand for oxygen in the bodyduring infections,after heavy physical workout,when exposed to extreme cold or hot summer or excess fluid loss (due to diarrhoea or vomiting)the sickling process gets accelerated. The sickled red cells entangle with each other and cause obstruction in micro-capillaries leading to tremendous pain at that site. The frequency,period and intensity of crisis vary from individual to individual. When,where,how the crisis develops is difficult to predict. Pain remains for a few hours to a few days. The pain is unbearable and analgesic drugs have limited effect, says Dr Gunvant Yeola,who,along with Dr Prashant Dalvi,Dr Girish Kulkarni and Dr Yogesh Prabhune,devotedly worked to help treat patients of sickle-cell anaemia.
A sickle-cell medical kit,which consists of a polyherbal medicine called SC3,folic acid,soda mint and painkillers like paracetamol,is distributed free of cost. We have diagnosed 1,360 people with the disease,of whom 700 are under regular medical supervision. At present,the project is running without any financial support, say the doctors. It is a difficult hilly terrain located between the third and sixth ranges of Satpura,600 km away from Pune, where 96 per cent of the people belong to tribal groups.
We conduct bi-monthly sickle-cell diagnostic and treatment camps where 12-15 medical and paramedical staff travel for more than 16 hours,carrying laboratory equipment,generators and medicines, says Anil S Gujar,secretary,Maharashtra Arogya Mandal.
Their work has not gone unnoticed. While the government has yet to catch up,a few tribals themselves have donated their land for the Nandurbar centre. Manoj Pawara,who has been treated by Kate since he was 12,suffers from sickle-cell anaemia and has seen his eldest sister die of the disease.
They do not want others to die of this pain, says Kate,who continues to visit the centre and appeals to the tribals to get tested and be aware of their sickle-cell status.