<p>Sherjil Ozair is studying computer science at one of the dream institutes of the country, the Indian Institute of Technology-Delhi. <br /><br /></p>.<p>The 20-year-old looks like one of the many excited youngsters hanging around in the campus, except when you get to know that Ozair suffers from a rare disorder called the sickle cell thalassaemia.<br /><br />Thalassaemia is a genetic blood disorder in which a defect in a gene results in destruction of red blood cells, leading to acute anaemia. In sickle cell thalassaemia, the RBCs become crescent-shaped, instead of normal disc-shaped. The result is excruciating pain during attacks when the haemoglobin levels go down.<br /><br />Ozair’s condition was discovered when at the age of five his haemoglobin level went down to 4 gm/dl, when the normal is 14-18. <br /><br />“I was too young to realise it. But when I was 13, I had an attack for which I needed hospitalisation. The attacks initially were once or twice a year, which increased once I joined college,” said Ozair. Frequency of his attacks rose because of increase in stress levels. <br /><br />The only way to keep thalassaemia attacks at bay is to avoid physical and mental stress while taking in a lot of liquids.<br /><br />“We never let Sherjil feel that he is not normal. We monitored his diet a little and asked school teachers to not force him to play if he felt tired,” said Fahmida Ozair, Sherjil’s mother. She said this was the key to his academic success, including scoring the 257th rank in the IIT exam.<br /><br />But it's remains a tough life.<br /><br />“While normally people recover within 2-3 days after an infection, I get an attack with even minor cold or fever,” said Sherjil, emphasising that it does not mean one sits at home idle. “I do not avoid travelling in public transport for work but avoid going to amusement parks and entering into water,” said Sherjil.<br /><br />Instead of living in a closet, Ozair, whose name means ‘the one who writes’, found his calling in music. One of the toppers in the class at IIT, he played multiple instruments in his school band and was a guitarist for his college hostel band.<br /><br />Delhi has 2000 patients suffering from all kinds of thalassaemia. Four government hospitals – Deen Dayal Upadhyay, Guru Teg Bahadur, Chacha Nehru Bal Chikitsalaya and Lok Nayak – provide treatment free of cost.<br /><br />“Delhi is one of the few states where the treatment is free by the government. DDU and LNJP have 130 patients each, GTB has 100 while CNBC treats 40. Rest of the patients go to private hospitals,” said Shobha Tuli, vice-president of Thalassaemia International Federation (TIF).<br /><br />Patients suffering from Thalassaemia-major, the most common variant in Delhi, have to go through blood transfusion twice or thrice a month. Those who cannot avail the government facility spend Rs 6000 to 20,000 a month.<br /><br />“Most people cannot afford the treatment according to the guidelines of TIF,” said Tuli.<br /><br />The cost variations in the private hospitals are stark. While Apollo charges Rs 2,500 for single unit blood transfusion and Rs 3,300 for two units, Sir Ganga Ram Hospital charges Rs 1,200 and St Stephen’s Rs 1,000.<br /><br />“Blood for around 700 patients comes from Indian Red Cross Blood Bank,’ said Tuli.</p>
<p>Sherjil Ozair is studying computer science at one of the dream institutes of the country, the Indian Institute of Technology-Delhi. <br /><br /></p>.<p>The 20-year-old looks like one of the many excited youngsters hanging around in the campus, except when you get to know that Ozair suffers from a rare disorder called the sickle cell thalassaemia.<br /><br />Thalassaemia is a genetic blood disorder in which a defect in a gene results in destruction of red blood cells, leading to acute anaemia. In sickle cell thalassaemia, the RBCs become crescent-shaped, instead of normal disc-shaped. The result is excruciating pain during attacks when the haemoglobin levels go down.<br /><br />Ozair’s condition was discovered when at the age of five his haemoglobin level went down to 4 gm/dl, when the normal is 14-18. <br /><br />“I was too young to realise it. But when I was 13, I had an attack for which I needed hospitalisation. The attacks initially were once or twice a year, which increased once I joined college,” said Ozair. Frequency of his attacks rose because of increase in stress levels. <br /><br />The only way to keep thalassaemia attacks at bay is to avoid physical and mental stress while taking in a lot of liquids.<br /><br />“We never let Sherjil feel that he is not normal. We monitored his diet a little and asked school teachers to not force him to play if he felt tired,” said Fahmida Ozair, Sherjil’s mother. She said this was the key to his academic success, including scoring the 257th rank in the IIT exam.<br /><br />But it's remains a tough life.<br /><br />“While normally people recover within 2-3 days after an infection, I get an attack with even minor cold or fever,” said Sherjil, emphasising that it does not mean one sits at home idle. “I do not avoid travelling in public transport for work but avoid going to amusement parks and entering into water,” said Sherjil.<br /><br />Instead of living in a closet, Ozair, whose name means ‘the one who writes’, found his calling in music. One of the toppers in the class at IIT, he played multiple instruments in his school band and was a guitarist for his college hostel band.<br /><br />Delhi has 2000 patients suffering from all kinds of thalassaemia. Four government hospitals – Deen Dayal Upadhyay, Guru Teg Bahadur, Chacha Nehru Bal Chikitsalaya and Lok Nayak – provide treatment free of cost.<br /><br />“Delhi is one of the few states where the treatment is free by the government. DDU and LNJP have 130 patients each, GTB has 100 while CNBC treats 40. Rest of the patients go to private hospitals,” said Shobha Tuli, vice-president of Thalassaemia International Federation (TIF).<br /><br />Patients suffering from Thalassaemia-major, the most common variant in Delhi, have to go through blood transfusion twice or thrice a month. Those who cannot avail the government facility spend Rs 6000 to 20,000 a month.<br /><br />“Most people cannot afford the treatment according to the guidelines of TIF,” said Tuli.<br /><br />The cost variations in the private hospitals are stark. While Apollo charges Rs 2,500 for single unit blood transfusion and Rs 3,300 for two units, Sir Ganga Ram Hospital charges Rs 1,200 and St Stephen’s Rs 1,000.<br /><br />“Blood for around 700 patients comes from Indian Red Cross Blood Bank,’ said Tuli.</p>
