{"page":"\u003clink rel=\"stylesheet\" href=\"https://lessonplanet.com/assets/packs/css/resources-572d6a42.css\" /\u003e\n\u003clink rel=\"stylesheet\" href=\"https://lessonplanet.com/assets/packs/css/lp_boclips_stylesheets-f4d0de30.css\" media=\"all\" /\u003e\n\u003cdiv data-title='Genetic blood disorder threatens remote tribe' data-url='/boclips/videos/5c54bd28d8eafeecae132030' data-video-url='/boclips/videos/5c54bd28d8eafeecae132030' id='bo_player_modal'\u003e\n\u003cdiv class='boclips-resource-page modal-dialog panel-container'\u003e\n\u003cdiv class='react-notifications-root'\u003e\u003c/div\u003e\n\u003cdiv class='rp-header'\u003e\n\u003cdiv class='rp-type'\u003e\n\u003ci aria-hidden='true' class='fai fa-regular fa-circle-play'\u003e\u003c/i\u003e\nVideo\n\u003c/div\u003e\n\u003ch1 class='rp-title' id='video-title'\u003e\nGenetic blood disorder threatens remote tribe\n\u003c/h1\u003e\n\u003cdiv class='rp-actions'\u003e\n\u003cdiv class='mr-1'\u003e\n\u003ca class=\"btn btn-success\" data-posthog-event=\"Signup: LP Signup Activity\" data-posthog-location=\"body_link_boclips\" data-remote=\"true\" href=\"/subscription/new\"\u003e\u003cspan\u003e\u003cspan\u003eGet Free Access\u003c/span\u003e\u003cspan class=\"\"\u003e for 10 Days\u003c/span\u003e\u003cspan\u003e!\u003c/span\u003e\u003c/span\u003e\u003c/a\u003e\n\u003c/div\u003e\n\u003c/div\u003e\n\u003c/div\u003e\n\u003cdiv class='rp-body'\u003e\n\u003cdiv class='rp-info'\u003e\n\u003cdiv aria-label='Hide resource details' class='rp-hide-info' role='button' tabindex='0'\u003e\u0026times;\u003c/div\u003e\n\u003ci aria-label='Expand resource details' class='rp-expand-info fai fa-solid fa-up-right-and-down-left-from-center' role='button' tabindex='0'\u003e\u003c/i\u003e\n\u003ci aria-label='Compress resource details' class='rp-compress-info fai fa-solid fa-down-left-and-up-right-to-center' role='button' tabindex='0'\u003e\u003c/i\u003e\n\u003cdiv class='rp-rating'\u003e\n\u003cspan class='resource-pool'\u003e\n\u003cspan class='pool-label'\u003ePublisher:\u003c/span\u003e\n\u003cspan class='pool-name'\u003e\n\u003cspan class='text'\u003e\u003ca data-publisher-id=\"30356011\" href=\"/search?publisher_ids%5B%5D=30356011\"\u003eCurated Video\u003c/a\u003e\u003c/span\u003e\n\u003c/span\u003e\n\u003c/span\u003e\n\u003c/div\u003e\n\u003cdiv class='rp-description'\u003e\n\u003cspan class='short-description'\u003eTotopara, India - Recent, 20101. Wide of Toto priest conducting wedding ceremony for groom Nalbahadur Toto and bride Sonu Toto, chanting2. Close up of priest chanting3. Mid of wedding ceremony in progress4. Close up of bride Sonu Toto5....\u003c/span\u003e\n\u003cspan class='full-description hide'\u003eTotopara, India - Recent, 2010\u003cbr/\u003e1. Wide of Toto priest conducting wedding ceremony for groom Nalbahadur Toto and bride Sonu Toto, chanting\u003cbr/\u003e2. Close up of priest chanting\u003cbr/\u003e3. Mid of wedding ceremony in progress\u003cbr/\u003e4. Close up of bride Sonu Toto\u003cbr/\u003e5. Close up of groom Nalbahadur Toto\u003cbr/\u003e6. Pan of Toto guests seated for the wedding feast\u003cbr/\u003e7. Various of Toto women sitting\u003cbr/\u003e8. SOUNDBITE: (Bengali) Sachin Toto, community head:\u003cbr/\u003e \"Right now in our community, not many people are aware of the need to get tested for Thalassemia before getting married. Only some of the slightly educated ones are becoming aware gradually and may marry after getting tested for Thalassemia.\" \u003cbr/\u003e9. Various of blood samples being taken from Toto students\u003cbr/\u003eCalcutta, India - Recent, 2010\u003cbr/\u003e10. Close up of blood samples in test tubes moving on a machine in a lab\u003cbr/\u003e11. Various of lab technician doing blood test on the machine\u003cbr/\u003e12. Close up of machine printing out blood test results\u003cbr/\u003e13. Mid of lab technician shaking test tube containing blood sample \u003cbr/\u003e14. Close up of monitor showing blood test readings \u003cbr/\u003e15. SOUNDBITE: (English) Dr Ashis Mukherjee, Netaji Subhash Chandra Bose Cancer Research Institute, Calcutta:\u003cbr/\u003e \" Toto's population number is 1366 and whatever study we have done, 45 per cent (population) is carrier...so almost 600 people are carrier.They should marry...they should maintain their culture but one carrier should marry with a normal one. That custom should be followed so that we can save this Toto tribe.\"\u003cbr/\u003eTotopara, India - Recent, 2010\u003cbr/\u003e16. Wide of wild elephants crossing the road\u003cbr/\u003e17. Close up of sign reading 'Way to Totopara '\u003cbr/\u003e18. Various of Toto women carrying firewood and leaves \u003cbr/\u003e19. Wide of a traditional Toto elevated hut in the village \u003cbr/\u003e20. Wide of Toto tribesman stirring liquor 'Eu' in a vessel\u003cbr/\u003e21. Close up of liquor being prepared in the vessel\u003cbr/\u003e22. Close of Toto man preparing the liquor\u003cbr/\u003e23. Mid of Toto man drinking liquor from a bowl\u003cbr/\u003e24. Man helping woman put down a clay pot containing liquor\u003cbr/\u003e25. Pan of clay pots containing liquor\u003cbr/\u003e26.SOUNDBITE: (Bengali) Jogesh Burman, Tribal Welfare Minister, Government of West Bengal:\u003cbr/\u003e \"We have provided a hospital, a high school, roads and homes for the Toto tribals. But the difficulty we are facing is the clash between modernity and their tradition. Some of the tribal children are now getting educated and trying to change but the older generation wants to continue leading the traditional life....they did not use the modern sanitation provided for them. With some motivation, some people are gradually beginning to use it now.\"\u003cbr/\u003e27. Various of Toto children playing on swings\u003cbr/\u003e28. Wide of Toto children in class room, teacher talking about Thalassemia and the need to get tested\u003cbr/\u003e29. Mid of children\u003cbr/\u003e30. Teacher holding up file containing test reports of children tested for Thalassemia\u003cbr/\u003e31. Wide of teacher talking about Thalassemia in the class room\u003cbr/\u003e32. SOUNDBITE: (Bengali) Harendranath Saibo, school Headmaster:\u003cbr/\u003e \"Among the children in this school, the incidence of Thalassemia is about 60 per cent .\"\u003cbr/\u003e33. Wide of a Toto tribal family outside their hut\u003cbr/\u003e34. Mid of Toto women\u003cbr/\u003e35. Close up of a Toto child\u003cbr/\u003e36. SOUNDBITE: (Bengali) Jogesh Toto, student suffering from Thalassemia: \u003cbr/\u003e \"One doctor had come to visit, he took the blood samples. Then he came with the reports - and it showed Thalassemia. It was a red mark (for Thalassemia positive). So a red cannot marry another red...a red can only marry a white (mark for Thalessemia negative ).This is what they told us....if a red married another red, the children can be born infected.\"\u003cbr/\u003e37. Various of Toto women cooking meat and vegetables\u003cbr/\u003e38. Various of woman tying up a young child on her back with a cloth and walking\u003cbr/\u003e39. Wide of women in a tribal household\u003cbr/\u003e40. Wide of bank manager Bhakti Toto in his office\u003cbr/\u003e41. Close up of papers on desk\u003cbr/\u003e42. SOUNDBITE: (Bengali) Bhakti Toto, Bank Manager of Totopara Rural Bank: \"I feel that if I marry within the Toto community, the chances of a problem are very high....so I will have to get out of it. But on the other hand, we have our culture. We are trying to preserve our culture...may be we can use our own language to create awareness about the tests (for Thalassemia) among our community members. I feel worried about this.\"\u003cbr/\u003e43. Wide of Toto women sitting\u003cbr/\u003e44. Close up of women\u003cbr/\u003e45. Mid of Toto woman drinking liquor from a bowl\u003cbr/\u003e46. Close up of woman smoking\u003cbr/\u003e47. Mid of women sitting\u003cbr/\u003eA sub-Himalayan tribe in India's West Bengal state is struggling for survival as it battles a high incidence of Thalassemia, a genetic blood disorder.\u003cbr/\u003ePeople rarely marry outside their community, thus the genetic pool is small. \u003cbr/\u003eA recent study conducted by the Netaji Subhash Chandra Bose Cancer Research Institute in Calcutta found that Thalassemia is affecting nearly 45 per cent of the Toto population.\u003cbr/\u003eThalassemia is a hereditary form of anaemia which can result in a reduction in red blood cells, causing weakness and breathlessness. \u003cbr/\u003eThe state government has now launched an awareness campaign to get the Toto tribals tested for Thalassemia before they marry.\u003cbr/\u003eNalbahadur Toto, a farmer by profession, getting married at a traditional tribal ceremony.\u003cbr/\u003eBoth Nalbahadur aged 26 and his 20 year old bride Sonu belong to the Toto tribe, an isolated community living near the border of Bhutan and West Bengal. \u003cbr/\u003eThe tribe has seen a steady decline in its population over the years and its current headcount stands at 1366.\u003cbr/\u003eRecent studies have shown that nearly 45 per cent of the Toto tribe are either infected with or are carriers of the Thalassemia trait.\u003cbr/\u003eIf carriers get married to each other, the possibility of their offspring carrying the same disease is very high (1 in 4).  \u003cbr/\u003eThe high incidence of the genetic blood disorder among the Toto tribe is attributed to inter-community marriages in accordance with their customs, leading to a large number of children being born with the condition. \u003cbr/\u003eTotos marrying outside their community are often ostracised.\u003cbr/\u003eLike most other Totos, both Nalbahadur and Sonu are completely unaware of their Thalassemia status .\u003cbr/\u003eCommunity leader Sachin Toto says that not many people in the community are aware of the need to get tested for Thalassemia before getting married though some more educated people are becoming aware gradually. \u003cbr/\u003e \"Right now in our community, not many people are aware of the need to get tested for Thalassemia before getting married. Only some of the slightly educated ones are becoming aware gradually and may marry after getting tested for Thalassemia.\" he says. \u003cbr/\u003eThe plight of the Totos came to light after the Calcutta-based Netaji Subhash Chandra Bose Cancer Research Institute  conducted blood tests among the Totos to study their health patterns.\u003cbr/\u003eThalassemia is a group of inherited blood disorders that can cause mild to severe anaemia. \u003cbr/\u003eIt leads to problems with the production of haemoglobin in red blood cells and can require treatment with bone marrow transfusions or stem cell transplants .\u003cbr/\u003eA simple blood test can detect whether you are a carrier or have a trait of Thalassemia minor.\u003cbr/\u003eSome people are \"silent carriers\" with no symptoms.  \u003cbr/\u003eThe study also showed that among the unmarried Totos , over 15% of were carriers of the Thalassaemia trait.\u003cbr/\u003e \" Totos population number is 1366 and whatever study we have done , 45 per cent ( population ) is carrier...so almost 600 people are carrier.They should marry...they should maintain their culture but one carrier should marry with a normal one.That custom should be followed so that we can save this Toto tribe ,\" says Dr Ashis Mukherjee , who led the team of doctors conducting the study in Calcutta.\u003cbr/\u003eThe Toto tribes are considered to be of the Mongoloid race with a flat nose and small eyes . \u003cbr/\u003eThey inhabit areas close to the forests in Eastern India, living off farming, livestock and forest produce.\u003cbr/\u003eThe community follows a conventional lifestyle - their staple diet being meat and 'Eu ', a home-made liquor.\u003cbr/\u003e Eu is made from fermented Marua, a kind of millet mixed with rice powder and malt and is traditionally given as a gift to the newly-wed Toto couples. \u003cbr/\u003eModern influences have reached the community in the form of schools, hospitals and roads.\u003cbr/\u003eBut authorities say the clash between tradition and modernity, specially among the older generation of Totos , has made it difficult to initiate social change in the community.\u003cbr/\u003e \"We have provided a hospital , a high school , roads and homes for the Toto tribals. But the difficulty we are facing is the clash between modernity and their tradition. Some of the tribal children are now getting educated and trying to change but the older generation wants to continue leading the traditional life....they did not use the modern sanitation provided for them. With some motivation , some people are gradually beginning to use it now ,\" says Jogesh Burman, the Tribal Welfare Minister of West Bengal state.\u003cbr/\u003eThe state administration, in collaboration with the Netaji Subhash Chandra Bose Cancer Research Institute has now begun a Thalassemia awareness campaign in Totopara.\u003cbr/\u003eA satellite centre will be opened to spread awareness among the community about the prevalence of the virus, advising them not to marry immediate relatives and have a blood test done pre-marriage. \u003cbr/\u003eTreatment of the Thalassemic patients will also be part of the campaign.\u003cbr/\u003eAt the Totopara school, young students are being taught about the disease and ways to prevent it.\u003cbr/\u003eThe children are encouraged to get themselves and their family members tested and keep in mind their ' red ' for Thalassemia positive or  'white' for Thalassemia negative status . \u003cbr/\u003eThe headmaster of the school says 60 per cent of the children are either Thalassemia carriers or affected with the condition.\u003cbr/\u003eAmong them is Jogesh Toto , who was recently tested positive for Thalassemia and is now aware of the danger of marrying another Thalassemia carrier .\u003cbr/\u003e \"One doctor had come to visit , he took the blood samples. Then he came with the reports - and it showed Thalassemia. It was a red mark ( for Thalassemia positive ). So a red cannot marry another red...a red can only marry a white ( mark for Thalessemia negative ).This is what they told us....if a red married another red , the children can be born infected ,\" he says.\u003cbr/\u003eBut a growing awareness about the high incidence of Thalassemia among the community has caused people to become worried about the future of their social and ethnic identity .\u003cbr/\u003eMany fear that if the young Totos begin to marry outside the community to avoid partners who may be Thalassemia carriers, it would mean an end of their customs and cultural practices.\u003cbr/\u003eBhakti Toto is a bank manager at the Totopara Rural Bank and is looking for a suitable bride. \u003cbr/\u003e \"I feel that if I marry within the Toto community , the chances of a problem are very high....so I will have to get out of it. But on the other hand , we have our culture. We are trying to preserve our culture...may be we can use our own language to create awareness about the tests ( for Thalassemia ) among our community members. I feel worried about this,\" he says.\u003cbr/\u003eWhether the Totos choose saving their tribe from death and disease over giving up the traditional practice of marrying within the tribe is a question the community will need to decide on. \u003cbr/\u003eAccording to the Indian Anthropological Society, the average life span of Totos has come down to 35 in recent times. \u003cbr/\u003eThe term Thalassemia refers to any of a group of inherited hypochromic anaemias and especially Cooley's anaemia controlled by a series of allelic genes that cause reduction in or failure of synthesis of one of the globin chains making up haemoglobin and that tend to occur especially in individuals of Mediterranean, African, or southeastern Asian ancestry-sometimes used with a prefix (as alpha-, beta-, or delta-) to indicate the haemoglobin chain affected; called also Mediterranean anaemia.\u003cbr/\u003e\u003c/span\u003e\n\u003c/div\u003e\n\u003cdiv class='action-container flex 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id=\"educator-ratings-root\"\u003e\u003c/div\u003e\u003cdiv id=\"all-educator-ratings-root\"\u003e\u003c/div\u003e\u003cdiv id=\"educator-rating-form-root\"\u003e\u003c/div\u003e\n\u003c/div\u003e\n\u003c/div\u003e\n\u003cdiv class='rp-resource'\u003e\n\u003cdiv aria-label='Show resource details' class='rp-show-info' role='button' tabindex='0'\u003e\n\u003ci class='fai fa-solid fa-align-left'\u003e\u003c/i\u003e\nShow resource details\n\u003c/div\u003e\n\u003cdiv aria-label='Video player' class='player' id='player-wrapper' role='region'\u003e\n\u003cdiv class='relative container mx-auto' id='lp-boclips-visitor-thumbnail'\u003e\n\u003ca class=\"block\" data-html=\"true\" data-placement=\"bottom\" data-trigger=\"click\" data-content=\"\u003cdiv class=\u0026quot;text-center py-2\u0026quot;\u003e\u003ca class=\u0026quot;bold\u0026quot; href=\u0026quot;/auth/users/sign_in\u0026quot;\u003eSign in\u003c/a\u003e or \u003ca class=\u0026quot;bold text-danger\u0026quot; data-posthog-event=\u0026quot;Signup: LP Signup Activity\u0026quot; data-posthog-location=\u0026quot;body_link_boclips\u0026quot; data-remote=\u0026quot;true\u0026quot; href=\u0026quot;/subscription/new\u0026quot;\u003eJoin Now\u003c/a\u003e\u003c/div\u003e\" data-title=\"Get Full Access\" data-container=\"body\" rel=\"popover\" tabindex=\"0\" aria-label=\"Play video: Genetic blood disorder threatens remote tribe\" href=\"/subscription/new\"\u003e\u003cimg class=\"resource-img img-thumbnail img-responsive z-10 lp-boclips-thumbnail w-full h-full lozad\" alt=\"Genetic blood disorder threatens remote tribe\" title=\"Genetic blood disorder threatens remote tribe\" onError=\"handleImageNotLoadedError(this)\" data-default-image=\"https://static.lp.lexp.cloud/images/attachment_defaults/resource/large/missing.png\" data-src=\"https://static.lp.lexp.cloud/images/attachment_defaults/resource/large/missing.png\" width=\"315\" height=\"220\" src=\"data:image/png;base64,R0lGODlhAQABAAD/ACwAAAAAAQABAAACADs\" /\u003e\n\u003cspan aria-hidden='true' class='flex justify-center items-center bg-white rounded-full w-16 h-16 absolute top-1/2 left-1/2 -mt-8 -ml-8 cursor-pointer z-0 border-2 border-primary drop-shadow-md lp-boclips-thumbnail-playBtn'\u003e\n\u003ci class='fa-solid fa-play text-primary text-3xl ml-1 drop-shadow-xl'\u003e\u003c/i\u003e\n\u003c/span\u003e\n\u003c/a\u003e\u003c/div\u003e\n\u003c/div\u003e\n\u003c/div\u003e\n\u003c/div\u003e\n\u003c/div\u003e\n\u003c/div\u003e\n"}