He has lost count of blood transfusions done on him during the last 22 years, but he never lost track to achieve what he wanted in life. Sukhsohit Singh, a Panchkula resident, has cracked the much coveted civil services examination with an all India rank of 42, in UPSC’s Civil Services (Main) Examination-2008 second merit list, which was declared by the commission on Friday afternoon.
Sukhsohit claims that he is the first patient of Thallassemia major (a rare genetic blood disorder, requiring frequent and regular blood transfusions after every 20-25 days) to have cleared this exam in India. He is currently pursuing his PhD from Panjab University. For the civil services examination, he had opted for public administration and sociology as optional subjects.
Having achieved success in his third attempt, Sukhsohit believes regular study of 15-18 hours helped him achieve the target. Sukhsohit never allowed the disorder to become a hindrance in his success by keeping himself preoccupied with his mission in life. “Disease is inevitable, but weather it causes ‘disease’ or not is entirely optional, just as pain is inevitable but suffering is altogether optional,” exclaimed a jubilant Sukhsohit.
Cracking the civil service was not so easy as before his exams he used to spend the entire day for blood transfusions at PGI, just threedays before his sociology mains exams.
Sukhsohit said he received a lot from PGI doctors and others at the Thalassemia Children Welfare Association and has now himself started contributing to the cause through his NGO Smiles. He now plans thallassemia welfare and management units in remote and far flung parts of India to make the treatment accessible to large number of patients.
When Hema Eswaran learnt of her second pregnancy, doctors at Voluntary Health Services, Taramani, advised tests to rule out the possibility of her child inheriting thalassemia.
Her first child Rahul, 12, was lucky as his brother was born negative for the condition and could donate bone marrow to cure his older brother who had thalassemia. Rahul’s surgery cost the family Rs.8 lakh, of which Rs.1.5 lakh came from the Kalaignar health insurance scheme.
Rahul is one of the four children who has been cured of the condition and are beneficiaries under the insurance scheme.
Thalassemia is a genetic condition in which a person is unable to produce the chemical needed to make haemoglobin. Such persons need blood transfusion throughout their life if doctors cannot find an exact bone marrow match for them.
Children with the condition become pale and lose appetite a few months after birth and require blood transfusion every three weeks. Regular transfusion releases iron into the bloodstream and medicines are given to normalise the iron content. For, a high amount of iron could result in complications in liver, pituitary and the heart.
At the VHS, 159 youngsters from across the State are registered with the Thalassemia Welfare Association. They are given free blood transfusion, but medication for removing the iron overload costs Rs.4,026 every month. Of this, Rs.2,700 come from the Kalaignar health insurance scheme, said Health Minister M.R.K. Panneerselvam, who met with the patients at the hospital on Saturday. A total of 52 patients had received Rs.7.13 lakh towards treatment cost, he added.
Hemato oncologist Revathi Raj of Apollo Specialty Hospital said screening pregnant women for the defective gene would help prevent the spread of the condition. She called for automated blood count machines in primary health centres.
“Since thalassemia carriers are slightly anaemic during pregnancy, doctors tend to prescribe iron tablets as they think the women are suffering from iron deficiency anaemia,” she said. “But a proper screening would prevent birth of children with the defective gene.” Every year, 10,000 thalassemic children are born in India, she added.
Director of the VHS Blood Bank J. Balsubramaniam, Medical Director of Star Health and Allied Insurance S. Prakash and Director of Medical Education V. Kanagasabai participated.
Jaipur: Eight children suffering from thalassemia were found to be HIV positive and 43 children were infected with Hepatitis C after the blood transfusion in Jodhpur.
A probe by the Thalassemia Society has revealed that 51 patients got infected during blood transfusion at the Ummed Hospital in Jodhpur. The glaring negligence was found after the Thalassemia society conducted lab tests on these children.
“The blood that is being transfused into the children may contain HIV strains. This is why when the blood tests were conducted on December 28, 2008, only five cases of HIV positive and 29 cases of Hepatitis Cwere identified among the kids. When the tests were conducted again in May by the SN Medical College, numbers increased from five to eight HIV positive cases and from 28 to 46 Hepatitis C cases, ” said Secretary Vipin Gupta.
“The thalassemia patient is dependent on blood transfusion. The danger of the wrong blood entering the body is always there. But what can we do?”, said a local resident.
Hospital authorities blame lack of critical medical facilities to detect impure strains in blood for the fatal error.
Mangalore, May 11: It is necessary to create awareness on the ‘thalassemia’ disease caused due to lack of red blood corpuscles in children, said Dr Santhosh Soans, children’s specialist, speaking at a press conference here on Sunday May 10.
The press conference was organized by Cipla Company as part of the ‘World Thalassemia Day’.
Around a hundred thousand children in the world fall prey to thalassemia disease every year. In India, the figure has gone up to 10,000 children per year, he said.
In Dakshina Kannada, the number of children getting afflicted by this disease is comparably less. Still, some cases in Sullia and Beltangady are being diagnosed with this defect, said Soans.
Regular and repeated blood transfusion of the thalassemia-affected persons happens to be the only preliminary treatment presently available for the disease, he explained.
Courtesy by: presstv.ir
Iranian researchers have produced the world’s first desferal pills to treat iron overload in patients suffering from thalassemia.
A hereditary blood disease, Thalassemia is characterized by altered hemoglobin formation and anemia. Patients must receive blood transfusions every 2 to 4 weeks to alleviate anemia-related symptoms.
While transfusion improves the quality of life in thalassemic patients, it adds excess iron to the body, resulting in chronic iron overload.
These patients receive desferal (deferoxamine mesylate USP), an iron-chelating agent, shots to slow the accumulation of iron in their bodies.
The newly-developed pills have shown promising results in overcoming the need for 8 to 12 injections per day in thalssemic patients. They can also lower the pain commonly experienced following the use of desferal injections.
“The new desferal pills have received FDA approval and are going to be mass-produced in the coming 3 months,” said managing director of the Iranian thalassemia association Mohammad Reza Mashhadi.
Some 18,616 thalassemic patients have been registered in Iran the majority of whom live in northern and southern parts of the country.
Due to a national prevention program which screens couples for thalassemia traits before marriage, the number of newly diagnosed cases has considerably decreased in recent years.
Courtesy by: expressindia.com
Ludhiana In view of 18th International Thalassemia Day, the departments of Transfusion Medicine and Pediatrics jointly organized 10th annual medicos voluntary blood donation camp today at Dayanand Medical College and Hospital.
The camp got started with an impressive inaugural ceremony, where Prem Gupta, Secretary of DMCH Managing Society, DMCH, was the chief guest while Principal of DMCH Dr Daljit Singh was and the guest of honour.About 150 units of blood were collected during the camp.
The day is observed all over the world to commemorate the death anniversary of George Englesoz of Cyprus, who died at a young age of 26. Despite being a thalassemic, he was an active member of Thalassemic International Federation and worked tirelessly for the welfare of thalassemic patients all over the world.
The president of Punjab Thalassemia Welfare Society, Rama Kapoor elaborated on the functioning of the society and monetary and other benefits being provided to the thalassemic children by the society
Professor and Head of Transfusion Medicine, Dr Amarjit Kaur extended a warm welcome to the dignitaries, faculty, voluntary blood donors, NGOs including Rashmi Karwa, Social Welfare Society, Mandi Ahmedgarh, Salaam Zindagi and Har Har Astha Sewa Parivar and thalassemic children present on the occasion. She appreciated the active involvement of medical professionals in voluntary donating the blood for this noble cause. A group of thalassemic children also put up a solo and group song performance.
Professor of Pediatrics and In-charge of Thalassemia Unit at DMCH, Dr Parveen C Sobti proposed a vote of thanks to those present on the occasion. She informed that presently, Thalassemia Unit at DMCH was catering to the need of 215 children, who were regularly getting blood transfusions. She expressed her deepest gratitude to those organizations and welfare societies who have contributed a lot for championing the noble cause of thalassemic children.
The faculty who donated blood started with Medical Suptd, Dr Sandeep Puri, who holds the distinction of being the leading blood donor from DMCH faculty and was honoured with a gold medal on the occasion.The regular faculty members include Dr Gautam Ahluwalia, Dr Navjot K. Bajwa, Dr GS Bajwa, Dr Rajesh Arya, Dr PPS Gill and Dr Gautam Biswas.
Contribution of the staff of Transfusion Medicine Department was also acknowledged for their round-the-clock working to meet the demand of blood and blood components. The monetary contributions were made by Sunila Gupta, Mrs Rama Munjal and Mrs Nandita Gupta for the treatment of those thalassemic children whose parents were not able to bear the cost of their medical treatment.
Courtesy by: expressbuzz.com
HYDERABAD: An awareness rally that was held at Charminar on Sunday to generate awareness about the effects of Thalassemia and Sickle Cell abnormalities, saw considerable participation from enthusiastic members of the pubic and curious bystanders alike. The rally was flagged off by Principal Secretary to the Ministry of Health and Medicine, L V Subramanyan. The march was organised by The Thalassemia And Sickle Cell Society, Hyderabad.
The key issues covered at the event included the need for adequate blood transfusion, donor facilities and ‘leuco- depleted blood’, which is required by Thalassemia patients.
The society announced that at present, the Government is considering providing essential medicines for affected patients at subsidised rates, along with making HBA2 test mandatory at the pre-martial state in the near future.
Presently, the Society provides aid and support for affected patients and their families by way of medical consultation, transfusion, check-ups and counselling.
Courtesy by: DubaiCityGuide.com
Staff members to wear campaign T-shirts and caps
Emirates National Oil Company (ENOC) has announced its support to the community health awareness campaign organised by Emirates Thalassemia Society from May 2 to 8, 2009, in connection with World Thalassemia Day on Friday, May 8, 2009.
In line with ENOC’s initiative, information posters on the genetic blood disorder are now available at all service stations in Dubai and Northern Emirates. ENOC staff members are also wearing campaign T-shirts and caps, as well as distributing information material among customers to encourage them to take advantage of the free screening tests and participate in the blood donation campaigns to assist those suffering from this disease.
Khalid Hadi, ENOC Group Brand and Marketing Manager, emphasised that ENOC’s support to the Thalassemia campaign reflects the group’s ongoing commitment to the community. He said: “Giving back to the community is a top priority for ENOC and we are keen to fulfil our commitment in all aspects of life, especially healthcare.”
“We are committed to support such initiatives as we realise the importance of enhancing the knowledge and awareness of Thalassemia. With a large number customer turnout, our service stations are ideal locations to disseminate information and increase the public’s awareness on the simple steps they can take that will make a huge difference,” Hadi added.
To further support Thalassemia patients, ENOC arranged a blood donation drive on May 4, 2009 at ENOC Complex, in cooperation with Al Wasl Hospital, which is the central blood bank of the Department of Health and Medical Services. ENOC employees and members from the public participated in the campaign to help meet the continuous need for blood supplies.
Thalassemia patients require regular, and in some cases frequent blood transfusions for survival. Though highly prevalent in the Gulf region, all it takes to prevent this disorder is a simple and inexpensive pre-marital blood test. The high prevalence of this disease means that blood banks in the country are constantly under pressure to meet the transfusion needs of patients.
The Thalassemia Centre functioning at Al Wasl Hospital under the Department of Health and Medical Services currently uses 60% of its blood reserves to treat Thalassemia patients.
Courtesy by: gujaratglobal.com
Gujarat Global News Network, Ahmedabad
The state government’s programme to conduct thalassemia tests in the universities has proved to be a major flop show. In the last four months tests have been done on less than 5 percent students. This is despite the fact that thalassemia is increasing at a fast rate and Gujarat alone has nearly 7,000 patients.
Thalassemia is a common genetic disease. It can be detected by blood test only. A child starts losing haemoglobin by 12 months and has to be given blood transfusion frequently throughout his life. Blood transfusion alone does not solve the problem. This also causes iron deposition which may lead to organ failure and consequently death of the patient. To deal with this iron is removed by expensive iron chelation injections.
In India every year nearly 10,000 children are found with thalassemia. Though various NGOs and some medical organizations have been conducting programmes about the disease, lack of awareness is still a major problem which has resulted in rise in number of patients.
May 8 is World Thalassemia day and on the occasion city based Thalassemia Jagruti Foundation has organized an entertainment programme for the patients. Secretary of the foundation Dr. Anil Khatri said that lack of awareness is the major reason for this disease. Though it is genetic and is found more in some communities.
Ahmedabad alone has nearly 1,000 thalassemia patients which are increasing every year. Blood transfusion is a costly process and at times risky too. He said that there are five patients in the city who have developed HIV infection after transfusion.
The foundation and other NGOs have made representations to the government for providing financial assistance to thalassemia patients. The response is good, that is what Dr. Khatri has to say when asked about the steps government had taken. The government has given approval to a proposal for free travel to thalassemia patients in ST and AMTS buses. It is likely to be implemented in a month.
The Red Cross Society is conducting thalassemia test programmes in various colleges throughout the state. But the response of the students is poor, Prakash Parmar, Progamme Manager Red Cross society said. He said that in Ahmedabad there are nearly 75,000 college students and only 5,000 have undergone tests.
Wagh Bakri group is actively involved in prevention of thalassemia.