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The Red Drought

The Bombay Group, people with a rare genetic defect, see few avenues for help

The Red Drought
Jagdessh N.V.
The Red Drought
outlookindia.com
-0001-11-30T00:00:00+0553
One in a million. The phrase fits this 'closely knit' group to a T, just that for them it stands more for trauma. The chosen few—referred to as the Bombay Group in medical circles—have a rare blood disorder which makes them completely dependent on one of their own in the event of a crisis.

Bombay Blood, called so because it was discovered by a city medical team in 1952, is blood with a rare genetic disorder where the red cells lack the H antigens present in the common groups. (Antigens foreign to a body will set off the formation of antibodies by its immune system.) Thus, Bombay Group members can't accept blood from any of the common groups in case of an emergency. For, upon contact with such blood, the serum of a Bombay Group person will produce antibodies for anti-H—setting off an adverse reaction.

One of the more unexplained genetic puzzles, it has proved a rather tricky challenge for hospitals in various parts of the world—cropping up among Indians, Japanese, Taiwanese, Caucasians and in recent years on Reunion Island in the Indian Ocean. Those catalogued in this rare group need blood from a person with similar classification. For them, the common groups of A, B and O only spell doom. Result: surgeries are put on hold, sometimes even called off, for the hunt could be frighteningly slow. In the odd case, as with people hospitalised after an accident, the pursuit has sometimes been abandoned as futile.

Jaya Manavalan, a social worker in Chennai, should know. She posted a plea for donors on the net to facilitate surgery for a patient who had suffered a stroke. Only two replies came—one from an Indian woman settled in Dallas, and the other from another Indian in Saudi Arabia. None from India. Jaya eventually lost track of the patient and has no idea whether he was operated upon or not.

In Bangalore, photographer C.P. Govindaswamy, 60, has been in severe pain for some time following a bone infection in his right leg. It's certain the leg will be amputated because the infection has spread, but the doctors are yet to acquire the four bottles of blood required for the surgery. After a fortnight-long wait at a local hospital, he is now back home with an assurance that he would be operated upon as soon as donors come through.

Madhuri Pednekar, 28, who works for an electronics firm in Mumbai, has been one of the lucky ones. Last year, during her pregnancy she fainted and had to be wheeled in for emergency treatment. Fortunately, doctors discovered that her siblings—sister Madhavi Kambli, 26, and younger brother Manish Kambli—could double up as donors as all of them tested positive for the Bombay Group.

Of course, in relative numbers, Bombay Group people add up to a microscopic minority. The All India Institute of Medical Sciences (AIIMS), New Delhi, has chalked up only one name (Aslam, who's from Nepal) against this group in 16 years. "I have seen 70-80 lakh cross matches in my 16 years here. Only one of them was a 'Bombay phenotype' blood group. It is extremely rare, perhaps why we don't have even a single donor on our list in this particular group. If such a case is referred to us, the best we can do is refer him to Mumbai hospitals like kem or Tata Memorial," says Dr Kavitha Chatterjee, chief medical officer, AIIMS.

The situation's the same in most hospitals across the country. For instance, the Mallya Hospital in Bangalore has treated two men in 12 years, while a man who turned up for cardiac surgery at the Jayadeva Institute of Cardiology, Bangalore, waited for a couple of months to garner a couple of bottles ahead of the operation. Homemaker Leela Sharma's search for one bottle commenced six months ahead of the arrival of her twin daughters earlier this year. Her husband Arvind scouted for a donor in all the blood banks in Bangalore and elsewhere, managed to find one just in time.The frantic search has prompted him to draw up a list of 25 people with this rare group as crucial information.

The woes of 'the group' are aggravated by a number of factors. First, most blood banks that document members are located in Mumbai. Second, there's the lack of awareness among those who man the blood banks. Third, the long-drawn process involved in confirming that a blood sample can be classified as Bombay Group (the ICMR's Institute of Immuno-hematology, Mumbai, is the only referral facility in the country). Last, the pursuit of donors, who often migrate without informing the blood banks. "Often donors have just donated and cannot do so again. Or, they have people in their family they need to donate for," says Dr Shekhar of JJ Hospital's blood bank. Here, only a handful of cases with this blood group have been treated since 1992, when the blood bank was established.

The government or medical fraternity, on its part, hasn't even done a random sample survey to fix a figure on its occurrence in the Indian population. In Mumbai, however, most blood banks have a database of donors, for the numbers seem to be high in this state, particularly the southwestern region where one in 4,600 has been classified as belonging to this group. For other states, experts would only guess a figure, between 1:10,000 to 1:1,00,000 or more. ICMR is working with Bombay Group samples drawn from various parts of the country, the focus now being on the why and wherefore of this genetic puzzle.

"The most common factor is consanguinity, while others have a mutation in their genes. We are working on identification of the factors that cause the mutation and the substitution (of gene) that has taken place," says Dr K. Vasantha, assistant director, Institute of Immuno-hematology, ICMR, Mumbai. The organisation has also launched an awareness drive through its annual workshops for blood bank officers from all states. "As part of this effort, we also talk to them about how to locate donors (screening of siblings and cousins from the group)," she says.

In Bangalore, an Indian Council for Voluntary Blood Donors has also been launched. B. Kumar, an Indian Space Research Organisation (ISRO) employee and a founder, has enlisted donors from among colleagues at their facility in Ahmedabad as well as from Christian Medical College (CMC) Hospital, Vellore, Tamil Nadu. "Our effort is directed at encouraging donors to step forward and dissociate the myths associated with blood transfusion in India," says Kumar. He plans to encourage helplines in all cities for this extraordinary blood group.




By B.R. Srikanth with inputs from Saumya Roy in Mumbai and Smita Mitra in Delhi
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