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Wednesday 23 December 2009

Progeria patients surviving for existence

Seeing 22-year-old Ikramul Khan and his brother Ali Hussein, a 11-year-old child, with their almost translucent skin, emaciated bodies, thin hair, weird looking fingers and a pair of alien-like eyes with a big smile revealing unaligned teeth … is not a very pleasant sight. They are like Auro in the film Paa starring Amitabh Bachchan, who plays the role of a child suffering from progeria, a genetic disorder in which the child ages at an unbelievably fast rate. It is a debilitating, rare illness with just 45 odd cases in the world. The disease, which infects one in four lakh people, is present in India's Bisul Khan and Razia Khatun's family, where more than one member suffers from progeria. Bisul Khan (45) and his wife Razia (40) had seven children in all. Five of them were born with progeria, which is characterized by premature ageing. Out of the five, three daughters are dead. Their daughter Sanjita (21) and youngest child Gulab are healthy. Ikramul and Ali Hussein are still alive but their medical ages are 85 and 66 respectively. Rehana was 23 when she died a natural death last year. Her medical age was 90 years. Though they are basically from Dumri village in Saran district of Bihar, they were forced by the villagers to shift their base out of the village in 2003. Villagers believed that the children of Razia and Bisul Khan were cursed. "We could not forget those dreadful days. My children could not come out of the house during daytime.

They were considered bad omens; they were called 'ghosts' and the villagers abused my wife as a witch. We were forced to live at the periphery of the village," said Bisul, who works as a security guard in Kolkata. Their mother Razia too could not stop herself and says, "The villagers made our life hell. The children could not wear stitched clothes, as they would not fit. They had to wrap blankets around their body. Whenever they came out with blankets around them, people laughed at them. So, they used to sit locked up in the house all day." Tired of being taunted and ostracized, Razia and Bisul Khan even planned a family suicide. Until they reached Kolkata about six years ago, they had no clue about this medical condition. Bisul became sure that his children were abnormal, as they could not bend their legs while sitting for toilet. Their legs were stiff even at tender ages of two and three. "We did everything for our children. We took them to child specialist, skin specialist, homeopathy and even ayurvedic practitioners. But no one could diagnose the disease. Had we been explained the problem earlier, we would not have gone for so many children," said Bisul. It was a chance meeting with doctors like Apurba Ghosh, director of the Institute of Children Health, Kolkata and Dr Chandan Chatterjee from Switzerland, who were the first to diagnose this disorder. In fact, when Rubena died of pneumonia, it was the first time the medical team was convinced that the kids were affected with progeria. Rubena's death proved that progeria was actually an inherited and recessive condition. "There are, in all, 45 known cases worldwide, all isolated and seemingly random.

A progeric child's ageing process remains normal up to the age of seven. After that they develop striking characteristic syndromes like failure to thrive, premature baldness, heart disease, thinning bones and arthritis and several other symptoms that people grapple with in their old age. But progeria does not hamper the average IQ level of the children," says Shekhar Chatterjee, general secretary of S B Devi Charity Home, Kolkata which takes care of progeria family's needs, financial problems and medical requirements. Dr Chatterjee has been working in collaboration with the University of Basel, Switzerland, where a team led by him has been constantly monitoring the progress of the family. Progeria is caused by a single tiny defect in the child's genetic code, but it has devastating and life-changing consequences. Traditionally, progeria victims do not live beyond their early 20s. But as compared to other victims, Ikramul who is now 22 is still alive. "We know there is no cure for the condition, but over the years we have seen that healthy food and lifestyle changes can enhance the life expectancy. All the credit goes to proper medication, healthy diet and regular psychological sessions that Ali and Ikramul have been able to survive for so long," says Dr Ajay Mukherjee, the senior researcher with the project. Ali is vivacious among them. He sounds more like an enthusiastic 11-year-old despite the 66-year-old body where he has been trapped. "I'm a die hard Salman Khan fan and could dance like him six months back. I danced well in a Rotary Club function. They had given us Rs 2,000 to get a set-top box." Ikramul loves Shahrukh Khan. But his frail body cannot retain this enthusiasm. He takes long breaths in between. His slow movement from one place to another inside the house proves that his brittle bones and stiff joints do not permit him to move freely. Both the boys know about the film Paa and want to meet Amitabh and Abhishek Bachchan. "I'll be very happy to meet them. At least they thought it important to work in a film based on our life," said Ikramul. For Ali also meeting Amitabh will be a memorable day of his life." The Khans look upon Dr Chatterjee as a family member. "He looks after us, bears all our expenses, provides us accommodation. Due to his kind cooperation we are now able to stay at our village home.

Our relatives and neighbours frequent our home to see Ikramul (23), the only progeric person to have survived this long. He is father figure for our children," said Bisul Khan, father of the boys. But in spite of all endeavours, life is far from normal for the boys. According to Dr Chatterjee, both of them suffer from astro-arthritis and cannot bend their legs or sit properly. Apart from weak bodies, they have underdeveloped livers and hearts. "They face difficulty in maintaining their balance when a fan is in full speed. They even need help for simple activities like changing clothes," says their mother. Ikramul, who speaks less and is depressed ever since his elder sister Rehana passed away, knows the pitiable condition of his disease. "I feel bad that I cannot run and play like other children. My ailments are like those of old people. I feel so sorry for myself," he laments. In spite of knowing that death is imminent for them, they enjoy their lives and have fun in their own way. Ali and Ikramul spend most of their time watching TV or downloading songs on the mobile phone, which Dr Chatterjee has gifted them and manage to find reasons to smile.link

Monday 21 December 2009

World Bank arm moots mantra for Bihar's development

A World Bank arm has suggested strengthening of the monitoring process in Bihar government's functioning and transparency in development works for the state's growth.

"Strengthening the monitoring process in government functioning and more transparency in the development measures will pave way for a developed Bihar," said World Bank Institute Vice-President Sanjay Pradhan.

Pradhan was addressing a session in a two-day conclave that concluded Sunday night. The World Bank Institute is the learning, training and capacity building arm of the World Bank.

Pradhan said lack of monitoring in government functioning and less transparency has been a stumbling block in the state's development.

"There was a need to strengthen the vigilance bureau and the Right to Information (RTI) to make headway for development of Bihar. People can use RTI to get any kind of information. The RTI has provided a rare opportunity to people to receive information," he said.

He said the RTI was yet to be implemented at grass root level and its benefit is yet to reach the marginalised sections of society.

Pradhan further said the World Bank was committed to pump $150 million for development of Bihar.

He said Bihar is poised for development as it recorded a growth rate of 7.7 percent during 2005-08.

Pradhan hails from Patna and was one of the over 100 professionals from Bihar who made a mark in various fields at home and abroad and attended the conclave.link

Wednesday 16 December 2009

Excess fluoride content in Darbhanga village

Bihar PHED minister Ashwani Choubey has directed officials to confirm excess fluoride content in water sources at Rampura village of Sighwara block in Darbhanga.

"Till date excess Fluoride was not detected Darbhnga. But I have asked officials to confirm the newpaper reports so that we can take appropriate steps," Choubey said pointing out that 12 districts of the state were afflicted by fluoride which causes fluorosis, a disease nicknamed by medical professionals as "bone crusher". Reported the detection of excess floride by a team of researchers.

Choubey conceded that fluoride and arsenic had been emerging as a major health problem in Bihar. "There are 13 districts in the state where arsenic poisioning have been detected and another 12 district where excess fluoride have been identified from the water source, There are three districts common in this list which have both arsenic and fluoride poisoning. They include Bhagalpur and Munger," he said. He pointed out that around 600 tolas and localities have been identified across the state which were identified as places where arsenic and floride were detected from the water source.

The minister claimed that the state government had mooted a Rs 1000- crore scheme for meeting the challenge. "It's a multi-village scheme in which tanks will be contructed and surface water will be supplied to the effected localities," he said. He said work has already started in Ara where 35 villages are hit due to arscenic, Vaishali and Patna(Maner). The three projects alone will cost over Rs 200 crore", he said.

He said the department had amlso mooted setting-up mini-plants for treatment of floride and arscenic water. "We will run these plants with solar power at places where there are no power", he stressed. He said in addtion to all these the department will install 2000 special tubewells which have mechanism to prevent fluoride and arsenic posioning",he remarked.

The minister claimed that the department had achieved about 60 per cent of its target in sinking 1.09 lakh tubewells across the state. He also spoke about the "Muktidham" Yojna of the state government aimed at making crematory ghats equiped with furnaces for burning bodies, shades, toilet, gardens and shops. He said that out of 50 such ghats selected, work was under progress in 21 of them and 15 would be copleted during this financial year. He, however, said that work was still to begin in many ghats because the land either belonged to private persons or the railways. link

Friday 11 December 2009

SC directs Bihar govt to appoint 34,540 primary teachers

If you are a trained teacher and unemployed, you should head for Bihar which has just been directed by the Supreme Court to recruit a whopping 34,540 primary teachers within six months.

The recruitment cannot be delayed as the apex court has kept pending a contempt petition to see the sincerity of the Nitish Kumar government to abide by its undertaking given to SC on January 18 and 23 of 2006.

The Patna High Court on September 26, 1996, had directed the state government to resume recruitment of teachers and it was of the opinion that the order was meant to force the state government to execute a public plan to help eradicate illiteracy.

The Bihar government had appealed against the HC judgment. However, during the pendency of the appeal, it sought to withdraw it in view of the state's decision to comply with the HC judgment, saying, "The government has prepared a policy framework for education in the state."

It had stated that recruiting teachers and filling vacancies of teachers posts in primary schools was its top priority. Recording this undertaking, the SC had disposed of the appeal on January 23, 2006.

However, one Nand Kishore Ojha filed a petition alleging that the Nitish Kumar government had done precious little to fulfil its promise to the apex court. Appearing for the state, attorney general G E Vahanvati and senior advocate Kailash Vas dev tried to convince the court that it was not the intention of the state to sidestep the undertaking before the SC.

Accepting the vacancy figure as mentioned in the 2003 advertisement, a Bench comprising Justices Altamas Kabir and H L Dattu said, "Notwithstanding the number of trained teachers available, we direct that the said available vacancies of 34,540, shown in the advertisement for appointment of primary teachers, be filled up with the said number of trained teachers as a one-time measure to give effect to the undertaking which had been given on January 18, 2006 and January 23, 2006."

The Bench added, "Let the contempt petition be adjourned for a further period of six months to enable the state government to implement this order and to submit a report on the next date as to the result of the discussions held between the petitioner and the concerned authorities."

Friday 4 December 2009

Bihar to promote litchi liquor

Time to get tipsy with litchi — literally. Bihar has accepted a proposal of the Indian Council of Agricultural Research (ICAR) to produce litchi liquor or wine, the first of its kind in India.
An official at the chief minister’s office said the Shahi litchi variety, largely grown in Bihar’s Muzaffarpur district, will be used to make the liquor or wine.

According to him, Chief Minister Nitish Kumar has accepted ICAR director general Mangala Ram’s proposal. “The government will formally make an announcement.”

The official said during a recent meeting with the chief minister, Ram explained the potential use of litchi, abundant in Bihar. “He said Bihar could increase its revenues by manufacturing litchi liquor or wine.”

Impressed by the proposal, the state government has decided to set up plants in Muzaffarpur for this purpose.

Officials at the National Research Centre for Litchi at Muzaffarpur said the making of liquor would be a shot in the arm for litchi farmers.

“They would not be forced to sell litchi at throwaway prices and there will be less chance of damage due to poor processing and packaging facilities,” they said.

About 70 percent of litchis produced in India are grown in Muzaffarpur and neighbouring districts, with the number of farmers engaged in growing the fruit increasing in the last decade.

However, in a report released last year, the World Bank had noted that litchis good enough for export were being grown in only about 10 percent of the 2,000-odd orchards in Muzaffarpur.

Countries that import litchis from India include the Netherlands, United Arab Emirates, Saudi Arabia, Lebanon, Canada, Russia and Yemen.link

Thursday 3 December 2009

Manpower shortage hits passport office

At least 39,000 passport applications are pending in Bihar because of acute shortage of manpower. On an average, the Patna passport office receives 16,000 applications per month of which 30 per cent of the applications are from the two districts of Siwan and Gopalganj.

Normally, it takes at least three months to issue passport to an individual.According to a rough estimate, the pending list has touched approximately 39,000 till November-end. Out of the total 90 sanctioned staff, only 45 are on the rolls here which has caused delay in issuing the passports. The existing sanctioned posts were allotted way back in 1997.

"Since then, the work load here in issuing passports has increased four fold," says newly appointed passport officer Anand Kumar.

Kumar, who is an Indian Railway Account Service (2000) cadre, joined as the new passport officer here only on Tuesday.

"There is also a lack of infrastructural facility here. We have only two existing passport printing machines out of the total requirement of four. We have already written to the ministry of external affairs (MEA) to increase the number of machines," Kumar said.

He said the existing daily passport issuing capacity was only 450 as against the normal capacity of 700. "Right now we have only two passport issuing officials here as against the normal requirement of four," Kumar said.

Asked about the corrupt practises in issuing passports, Kumar said he would utilize his experiences in the railways in dealing it corrupt practices and touts. Kumar, who hails from Buxar district, had also worked in various various other centres including Ambala Cantt., Lucknow and Delhi for the railways prior to joining the passport office here.

"I am committed to check corrupt practises in the passport office. I'll certainly utilize my vast experiences in the railways to contain corruption. First, I will have to streamline my internal system," Kumar said.

The two districts of Siwan and Gopalganj still maintain their top position in applying for passports. "Out of the total 16,000 applications for passports per month, nearly 5,330 come from these two districts alone," he said.

For the issuing of Tatkal passports, "we normally take one week to deliver the passport. But most of the applicants do not provide the copy of identity card. It is now essential to provide a copy of I-card for issuing passport," Kumar said.link

Bihar government may be hard put to explain starvation deaths

The Bihar government is likely to face trouble over a lawsuit alleging at least 100 people have died of hunger in the state in the last three years, as the Patna High Court has directed the petitioner to take it up with the state human rights commission.

Social activist Ramashray Singh, who had filed the public interest litigation (PIL), said he would approach the commission this week. Officials say the state government may not be in a position to answer all the questions asked by the commission.

An official appointed by the Supreme Court had said in October that at least 100 people have died of hunger in the past three years in Bihar. But the state government dismissed the claim.

"It is a hard fact that 100 people died of hunger in Bihar in the last three years due to the failure of food- and work-related government schemes," said Rupesh, state adviser to the commissioner of the Supreme Court to monitor the implementation of food-related schemes of the Bihar government.

Rupesh said he had submitted a report on hunger deaths in Bihar to the state government in August and another in October. The reports were also sent to the commissioner of Supreme Court N.C. Saxena.

Rupesh said the reports not only confirm the deaths due to hunger but "reveal the pathetic situation regarding implementation of food and social security schemes in Bihar".

These schemes include the Integrated Child Development Scheme, the Midday Meal Scheme, the public distribution system, the Antyodaya Anna Yojana, the Mahatma Gandhi National Rural Employment Guarantee Scheme, the National Maternity Benefit Scheme, the National Social Assistance Programme, the National Family Benefit Scheme and the Annapurna Yojana.

"Apart from major leakages and corruption, the coverage of government food schemes is so meagre that they leave huge holes in the social security net through which large numbers of most destitute women and men, girls and boys slip into starvation and hunger," said Rupesh.

The reports warned that the situation can worsen "if all possible action is not taken before it becomes uncontrollable".

Bihar has been hit very badly by drought and flood. As many as 26 districts are drought-affected. Nearly 40 percent of Bihar's 83 million people live below the poverty line, the highest in India, according to a World Bank report.

Rupesh said researchers led by him visited Begusarai, Muzaffarpur, Gaya, Jehanabad, Nalanda and Patna between June and August. These are the districts where starvation deaths have been reported by the media in the last two-three years.

Rupesh said that in Ratubigha village in Jehanabad district and Jhamawara village in Nalanda district, the block development officer (BDO) did not feel it necessary to send the body for postmortem or get a medical report after alleged starvation death.

In Tetua Tola Kharuna village in Gaya district, Murti Devi in her late 40s died Oct 10. Although the local administration denied that she died of hunger, Chief Minister Nitish Kumar has ordered a probe.

In Ratubigha village in Jehanabad district, about 50 km from here, three starvation deaths took place over four days in August, Rupesh said.

Ajay Dome, the son of one of the victims, Chalitar, claimed that his father went without food for eight days before he died. Rupesh's report points out that Ajay and his wife Renu Kumari were not on the list of people below the poverty line, so they did not get subsidised food. Chalitar' unemployed son said the family was fighting for survival.link