Sickle cell disease killing tribals, dalits in MP

ByManjari Mishra, TNN | Mar 14, 2013, 04.25 AM IST

MANDLA/JABALPUR: Tribals in Kundam, a settlement 40 km off Jabalpur, call it a black demon, one who strikes select families and ensures an early and agonizing death by sucking its victims white.

For once, medical experts couldn't agree more with this home spun wisdom that aptly describes sickle cell - an incurable genetic disorder which damages vital organs like liver, kidney, heart and spleen. The disease manifest at the school going age and patient rarely reaches adulthood.

Confined to tribals and dalits this slow and silent killer has been playing havoc in Madhya Pradesh for decades. Victims are too ignorant to comprehend gravity of the situation and state government, going by its inaction on the front is plain disinterested. So far, the state health department has no requisite data or details about the number of sickle cell patients. The only extensive study conducted by Dr R B Gupta, assistant director of Regional Medical Research Centre for Tribals (ICMR) lists the tribes worst affected as - Gonds pradhan, baiga, bhilala, bhil barel among others and the percentage, according to him, varies from five to 33 per cent of their total population.

Father Zhacharius Swamy, 84-year-old priest in Katra mission hospital, Mandla district, puts the number to well over 60 lakh in MP alone. Ailing and confined to bed now, the missionary claims to have treated over 20,000 patients during last 12 years. "The ignorant lot goes for sorcery till it is too late," he says. The government is most ill concerned, and they have no godfathers, he adds.

A decade ago Swamy raised Rs 1 crore and set up a unit to produce an ayurvedic oral anti neoplastic patented medicine. Sold as Alva-G it contains aloevera juice with other herbs. The potion, says the priest enhances immunity of the body and provides symptomatic relief to sickle cell patients, but it cannot cure them.

Results are encouraging, says Dr Lilly Ekka pediatrician in Mandla. Frequency of blood transfusion among patients- some of them are required to take it every two to three months- who have taken the medicine have shown a dramatic decline, he adds.

It is a great relief to people like Bhurelal Jharia, a landless labourer, who had come all the way from Jhabua for the magic cure on Monday. Three units of blood for his five-year-old son costs him Rs 250 at the government hospital and Rs 3000 at the private nursing home. With his three-year-old daughter diagnosed with the same symptom, Jharia is a worried man. "The ojha (quack), he said, has thrown up his hands, government doctor keeps ordering transfusion, so 'Dr Swamy' is his only hope.

"What is most damaging is total apathy on part of powers that be," says Dr Maya Chansoria, former dean and professor /head of pediatrics in government medical college, Jabalpur. Sickle cell causes slow death unlike an epidemic, where mortality is visible. So they can easily afford to overlook it.

"Apart from the basic sickling test none of the state medical colleges offer sophisticated tests like high pressure liquid chromatography (HPLC) or hemoglobin electrophoresis (HE). The lone sickle cell clinic in MP is located in Jabalpur and not in the endemic belt. In contrast Chhattisgarh government is making sincere efforts, paditrician and casualty medical officer Jabalpur medical college Dr Prashant Awasthi points out. State government, he said, "Has this year allocated funds to start diagnostic facilities in five districts-Rewa, Shahdol, Mandla, Barwani and Mandsaur but so far the facility is confined to government files."

An intensive awareness drive and genetic counseling could work best, says Dr Chansoria. Tribals need to be informed that a person with sickle cell trait must never marry another with similar trait or to avoid passing on the genes. Similarly, consanguineous marriages must be avoided. A recent study in Kundam found out that mean marital distance there was merely five kilometers. Counseling, therefore, cannot prolong the life span but can avert a disaster, she said.

What is sickle cell?

A genetic disorder confined to tribal and dalits where red blood cell show up as hooked or sickle shaped unlike the doughnut shaped normal red blood cells. The sickle cells can get trapped in tiniest blood vessels and block the normal blood flow and consequently cut off oxygen supply to tissues or organs.

The symptoms normally show up between children 3 to five years and result in retarded growth, recurrent jaundice, acute pain, tissue degeneration stroke and most often rupture of spleen.

Conventional treatment includes pain management, antibiotics, blood transfusion and surgery.

Source: http://timesofindia.indiatimes.com/city/bhopal/Sickle-cell-disease-kill…