May 8 was International Thalassemia Day.

Shimla-based public welfare trust Umang Foundation Wednesday asked the state government to include thalassemics in the category of disabled so that they could avail facilities being provided to the physically challenged. ‘The government should also initiate a screening programme for the detection of thalassemic children and frame appropriate policy for them,’ the trust’s chairman Ajai Srivastava said on World Thalassemia Day on Wednesday  He said members of the foundation met state Health Minister Kaul Singh and submitted a memorandum to him demanding facilities for thalassemic children. ‘Thalassemic children also have functional disability, so they should be included in the category of disabled. In this way they should be entitled for scholarship from school to university-level,’ Srivastava added.

He said that Himachal Pradesh did not have facilities for testing thalassemia and that poor parents could not afford costly medicines and faced problems during blood transfusion. ‘Thalassemia patients at Indira Gandhi Medical College and Hospital in Shimla are being provided free medicines. But other government hospitals do not have such a provision. It should also be extended to other hospitals,’ he said. A survey conducted by Umang Foundation at blood banks in the state shows that there are around 125 thalassemia patients in Himachal Pradesh. Srivastava said the government should conduct a survey to ascertain their exact number.

What is thalassemia?

Thalassemia Major is an inherited blood disorder in which the affected children are unable to maintain Haemoglobin (Hb) in the normal range. Their bone marrow cannot form sufficient red cells and red cell survival is also reduced.

The situation in India:

It is estimated that about 3.4% of our population is carrier of thalassemia (or suffering from minor thalassemia). Every year 7000-10,000 children with Thalassemia Major are born in India. It is more prevalent in communities like Sindhis, Punjabis, Gujaratis, Marwaris, Bengalis, Saraswats, Gaurs etc.

How is thalassemia caused?                                          

There are two types of the disease – minor and major. Thalassemia minors are people who carry one defective gene who are fine except in stressful situations in life (like some serious surgery/pregnancy) they may have low haemoglobin while major is a serious blood disorder which causes severe bouts of anaemia and related complications which is caused by the presence of two defective genes. When both parents are thalassemia minors or carriers, there is a 25% chance of birth of a thalassemia major child; 25% chance of a normal child and 50% chance of a thalassemia minor child.

There are various problems of living with thalassemia major:

• Patients need regular blood transfusions every three to eight weeks to maintain normal haemoglobin levels.
• With regular transfusion and removal of iron (chelation therapy), Thalassemics can live and grow into adulthood. If complications are avoided, they can enjoy a productive life.

• The only curative treatment is bone marrow transplant.

• Due to regular blood transfusions, there is a high chance of thalassemics being exposed to blood infections like HIV, HBV (Hepatitis B) and Malaria. If the donor’s infection is at an early stage (window period), the infection may not be even picked up during donor blood testing before transfusion.
• As a result of repeated blood transfusions, thalassemia patients develop iron overload. Unfortunately the human body has no natural mechanism of excreting the excess iron from the body (the excess iron can only be removed by using iron chelator drugs). This excess iron gets deposited in and around the various vital organs of the body and ultimately causes organ failure.
• Thalassemics also often suffer from other diseases like jaundice, osteoporosis and heart problems.

 Prevention of Thalassemia:Thalassemia is a preventable disorder. If one knows ones thalassemia status, one can be in touch with ones doctor for further counselling and prevent the birth of a thalassemia major child. Read more here.

Anshu Gupta, a school teacher, ensured her fiance got himself tested for thalassemia before tying the knot so that their children don’t suffer from the hereditary blood disorder. Doctors say many couples are now coming forward to undergo pre-marital thalassemia test. According to doctors, more than 10,000 thalassemic children are born in India every year and it can be easily prevented through greater awareness. May 8 is globally celebrated as ‘International Thalassemia Day’. ‘It is an inherited blood disorder in which the patients need to undergo regular blood transfusion since their body cannot produce enough haemoglobin,’ Dharma Choudhary, senior consultant and director hemato-oncology and bone marrow transplant, B.L.K. Super Specialty Hospital, told IANS.

Choudhary said that owing to spread of awareness many couples do come for thalassemia test but more needs to be done. ‘It is important that everyone before marriage should go for thalassemia test to ensure that both the partners don’t suffer from the genetic disorder. In case both the partners are suffering from it, chances to have a child suffering from thalassemia major (chronic) increases,’ he said. 

The disorder which requires regular blood transfusion can be cured if the patient gets the right donor for a bone marrow transplant. However, the success rate remains abysmally low at three to five percent. Ajay Rathore, who is suffering from the disorder, met his life partner on a matrimonial site and asked her to undergo thalassemia test. ‘Half-a-dozen girls rejected my demand to undergo a test but finally my wife accepted it. We got married as her family did not have any problem with me being thalassemic. I am blessed with a son, who is normal,’ said Rathore, who works in a multinational company in Noida.

Gupta says it is necessary that couples undergo thalassemia test to be on the safer side. ‘There was a case in my neighbourhood where the man’s family hid his thalassemic status and the girl was also suffering from the disorder. They had to go for abortion as they came to know that the child in the womb was thalassemia major,’ said the 30-year-old.

Manish Gogoi, programme officer, National Thalassemia Welfare Society says people are slowly getting aware about the disorder and every pregnant woman should be tested for thalassemia. ‘We have been running several campaigns to make people aware about it. Awareness is a key to fight against the disorder. We organise regular testing camps and many youngsters turn up for it,’ Gogoi told IANS. Gogoi also appealed to people to come forward for blood donation as thalassemic patients have to undergo blood transfusion regularly. ‘In our camps we see that couples are coming forward for the test. It is indeed heartening. I feel happy that young people are now more aware about it and come forward for the tests,’ Gogoi added.

What is Thalassemia?

Thalassemia Major is an inherited blood disorder in which the affected children are unable to maintain Haemoglobin (Hb) in the normal range. Their bone marrow cannot form sufficient red cells and red cell survival is also reduced.

The situation in India:

It is estimated that about 3.4% of our population is carrier of thalassemia (or suffering from minor thalassemia). Every year 7000-10,000 children with Thalassemia Major are born in India. It is more prevalent in communities like Sindhis, Punjabis, Gujaratis, Marwaris, Bengalis, Saraswats, Gaurs etc. Read more here. 

Source: IANS

An insurance scheme would also be launched with free premium for patients with chronic diseases to enable them to get continued treatment.  New dialysis units would be set up in 27 taluk hospitals at a cost of Rs 37.5 crore. Two private hospitals in each taluk would also be accredited to carry out dialysis under the scheme, the minister said.

The state of Kerala is a remarkable story as far as Human Development Index and other social indicators are concerned. In fact the state can compete with the most developed nations across the world when it comes to primary healthcare, education levels, infant mortality rate, maternal mortality rate and other indicators. Economists and other experts have all pondered how the Kerala Model could be replicated in other developing world scenarios. Despite having similar resources to the rest of the country, Kerala has a remarkable record. There are over 2,700 government medical institutions in the state, 330 beds per 100,000 people (highest in the country, India’s average is 90 per 100,000). 

 The rest of India, particularly the politicians in the Centre can take a leaf out of Kerala’s book and realise that universal health coverage is indeed a feasible dream if it’s planned out properly. 

Given the stigma attached to HIV, the family kept quiet about the child’s ordeal until Wednesday when they finally lodged a complaint with the state Health Minister VS Sivakumar. Her relatives staged a protest along with activists of the Democratic Youth Federation of India at the District Medical Office.

Calicut Medical College Hospital Superintendent Dr MK Ravindran said that the likelihood of the girl getting HIV from a transfusion was very low and could only happen in a certain circumstance where an HIV positive person has the virus but hasn’t tested positive yet and the hospital accidentally collect the contaminated blood.

What is thalassemia?

Thalassemia is an inherited blood disorder in which the affected children are unable to maintain Haemoglobin (Hb) in the normal range. Their bone marrow cannot form sufficient red cells and red cell survival is also reduced.

Tired of reading? Check out our YouTube Channel               

May 14 is World Thalassemia day.

While most of the children between the ages of six to ten years are busy playing and enjoying their childhood to the fullest; Amit Shankar (name changed) is lying on a hospital bed being administered blood transfusion for thalassemia.  A common routine for the six year old, he has to visit a blood transfusion clinic every three to eight weeks to maintain his heamoglobin level. Shankar lives to tell the tale of agony and despair that close to one lakh thalassemic patients in India suffer. In India close to 10,000 children are born with the disease.

Giving out the latest data on the disease, Minister of State for Health & Family Welfare Abu Hasem Khan Choudhury told Lok Sabha on March 8 that government had no specific strategy for genetic counseling and treatment for genetic diseases.  But the harsh truth is that young Shankar and many like him might well have escaped the disease, if only his parents had undergone a simple test before marriage.

Read: Thalassemia – understanding the disease

Reiterating the view, Dr Gitanjali Sharma, marriage and relationship counselor from Delhi, says, ‘When a couple comes for pre –marital counseling, I advise them to go for blood tests for the detection of genetic blood disorders like thalassemia if any. There have been several such instances when the couple has decided not to proceed with the alliance if any one of the partner was found to be affected with any of the genetic blood disorders.’

Thalassemias are inherited blood disorders. ‘Inherited’ means that the disorder is passed from parents to children through genes. Thalassemias cause the body to make fewer healthy red blood cells and less hemoglobin than normal. Each person can be either of the following three: Normal, Thalassemia Minor and Thalassemia Major. Thalassemia Major is a serious blood disorder. A person with the thalassemia major has insufficient hemoglobin(the critical oxygen carrying component of blood)

Detailing the crucial facts about the disorder, Dr V.P Choudhury, former head of hematology at All India Institute of Medical Sciences (AIIMS), warns, ‘ In India  about five crore people are carriers of thalassemic gene. If a person with a thalassemia trait marries another such person, the offspring has a 25 percent chance of developing full blown thalassemia.’

Thalassemia is 99 percent incurable; however, it is 100 percent preventable. Endorsing the view, Dr Choudhury formerly with AIIMS says, ‘Screening is what the need of the hour is. Every lady who is pregnant should be given a thalassemic test but unfortunately most of the pregnant women in India go for Antenatal check –ups after 15-20 weeks of their pregnancy which is too late for saving a thalassemic child.’

The health ministry body-ICMR- has helped to set up prenatal diagnostic facilities for haemoglobinopathies in five centers in the country in the states of Maharashtra, Gujarat, West Bengal, Karnataka and Punjab. Concurring with the view that government needs to do more, Dr Lona Mohapatra, head of department of laboratory at Rockland Hospital, Delhi, says, ‘Thalassemic patients need to go for blood transfusion every month, and the rates of blood transfusion vary from hospital to hospital, it is at this point where the government should interfere and should sanitize the rates.’ Emphasising on developing better and improved infrastructure facilities at pan India level, Dr. Choudhury asserts, ‘ Awareness is an issue but what is most intriguing is that if good facilities are not available at every hospital for screening purposes , then the general public will also not feel provoked to go and get their tests done for thalassemia.’

Check out the symptoms of thalassemia minor.

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 Content courtesy: DNA 

‘Out of 30 to 40,000 who need a bone marrow transplantation in the country, only 700 are done. Many suffering from congenital, genetic and acquired disorders like thalassemia, leukemia and multiple myeloma rely on blood transfusion, which is a temporary solution,’ said Dharma Choudhary, director, bone marrow transplant (BMT), BLK Hospital.

In BMT procedure, the diseased or damaged bone marrow (a soft, spongy blood forming tissue present in the cavities of bones) is replaced with healthy bone marrow with the replacement marrow mostly from blood relations like siblings and parents.

Doctors also stressed that more awareness on the bone marrow transplant is needed. ‘The BLK Hospital alone has performed 104 bone marrow transplants in past two years. We are the only private hospital who has performed more BMT than any other private hospitals. Only eight hospitals in Delhi are equipped to perform such surgeries,’ said Praneet Kumar, CEO, Radiant Life Care Private Limited.

Source: IANS

Related article: Side effects of bone marrow transplant 

Also read: New drug halves deadly side-effect of bone marrow transplant

“Haemophilia and thalassemia are life-threatening disorders. Affected people cannot work without job security,” S.S. Roychoudhury, chief executive officer of HFI, told IANS. He demanded the bill must be introduced during the ongoing winter session of parliament. The HFI also sent a memorandum to the ministry of social justice and empowerment and held a demonstration in at Jantar Mantar in the capital.

According to Mukesh Garodia, a 39-year-old haemophiliac, a muscle spasm or a minor cut can be fatal for a person with the disease. “A cramp in my wrist can lead to internal bleeding or profuse bleeding if I cut my finger, as the blood will not clot normally, making me bed-ridden for weeks or months at a stretch,” Garodia said. “A private employer will definitely not want to hire me because I can fall sick anytime. That’s why we need job security from the government,” said Garodia, a businessman from Guwahati, Assam.

The HFI has also demanded a provision for insurance coverage and employment without discrimination for people with haemophilia and thalassemia.

Every summer, 10-year-old Aditya’s parents face a tough time trying to arrange two units of ‘A negative’ blood for their thalassemia-afflicted son as the student community, who constitute a major chunk of donors, goes on vacation. Most of Delhi’s blood banks face a shortage particularly from April to August, as many of these rely on student donors.

“As schools and colleges shut for summer vacation, there is a sharp fall in blood donation camps during summer. The blood banks run out of blood and its components, right from the month of April till August,” N.K. Bhatia, medical director of Jan Jagriti Blood Bank of Delhi, told IANS. ”There is shortage of blood during summer. Though we keep in regular touch with the blood banks in and around Delhi and NCR region, every year during April to July we need to hunt for his (Aditya’s) blood group A negative as we need fresh blood to create components and A negative is a very rare group,” Seema Chopra, Aditya’s mother laments.

Thalassemic patients between the age of one to five years need one unit of blood every month, between the ages of five to 10 – two units every month, between the ages of 10 to 15 – three units are needed every month, and an adult thalassemic needs four units of blood every month. ”India requires 90 lakh units of blood every year, but the country manages to get only six lakh units. There is a perennial shortage of 25 lakh blood units. Out of six lakh units, 60 percent is donated by volunteers,” Bhatia said.

Delhi and National Capital Region (NCR) require 7 lakh to 8 lakh units of blood a year (around 40,000 units of blood each month) but get only 4 lakh to 5 lakh units.

“Over 75 percent of our donors are students in schools and colleges. With most educational institutions on holiday at this time, there is a huge shortage in supply. During summer if we target 100 volunteers, only 30 turn up,” a senior official of the Indian Red Cross Society (IRCS) told IANS.

He also said that there is irrational use of blood in India.

“One unit of blood belonging to the same group can be used by three different patients, but we don’t do that. Though there is a dearth of blood during summer, many blood banks waste human blood – at least 30 percent,” Bhatia said.

Shortage of blood in summer gives rise to various illegal activities, such as illegal sale of blood, say health officials.

“There is illegal sale of blood in Delhi due to a sharp fall in blood donation camps during summers. Most low-level employees working in private and government blood banks are involved in this illegal sale. I don’t think any doctor is involved in this,” V.K. Monga, former health chairman of the recently trifurcated Municipal Corporation of Delhi (MCD), said.

According to a consultant in transfusion medicine, the price of rare blood group types like A negative, O negative and AB negative, shoots up during summer.

“In private blood banks, the processed blood of the above category can go up from Rs.1,500 to Rs.5,000 per unit. The prescribed rate by the government is Rs.500 per unit,” the consultant said. 

Source: IANS

May 8th is World Thalassemia Day. We bring you information about the disease, its causes and prevention with help from Thalassemics India, a non-governmental organization working across the country, operating in close association with doctors, drug/equipment companies throughout the country and abroad, hospitals, Thalassemia associations & centers.

What is Thalassemia?

Thalassemia Major is an inherited blood disorder in which the affected children are unable to maintain Hemoglobin (Hb) in the normal range. Their bone marrow cannot form sufficient red cells and red cell survival is also reduced.

The situation in India:

It is estimated that about 3.4% of our population is carrier of thalassemia (or suffering from minor thalassemia). Every year 7000-10,000 children with Thalassemia Major are born in India. It is more prevalent in communities like Sindhis, Punjabis, Gujaratis, Marwaris, Bengalis, Saraswats, Gaurs etc.

How is Thalassemia caused?

Thalassemia is of two types: Minor and Major

• Thalassemia minors are people who carry one defective gene of Thalassemia .They are normal except that during stressful situations in life (like some serious surgery/ pregnancy etc) they may have low hemoglobin.
• Thalassemia Major is a serious blood disorder which causes severe anemia and related complications. This is caused by the presence of have two defective genes (acquired from each Thalassemia minor parent).

When both parents are Thalassemia minors or carriers, there is a 25% chance of birth of a Thalassemia Major child, 25% chance of a normal child and 50% chance of a Thalassemia Minor child.

Living with Thalassemia Major:

• Patients need regular blood transfusions every three to eight weeks to maintain normal hemoglobin levels.
• With regular transfusion and removal of iron (chelation therapy), Thalassemics can live and grow into adulthood. If complications are avoided, they can enjoy a productive life.
• The only curative treatment is bone marrow transplant.

Complications:

• Due to regular blood transfusions, there is a high chance of thalassemics being exposed to blood infections like HIV, HBV (Hepatitis B) and Malaria. If the donor’s infection is at an early stage (window period), the infection may not be even picked up during donor blood testing before transfusion.
• As a result of repeated blood transfusions, Thalassemia patients develop iron overload. Unfortunately the human body has no natural mechanism of excreting the excess iron from the body (the excess iron can only be removed by using iron chelator drugs). This excess iron gets deposited in and around the various vital organs of the body and ultimately causes organ failure.
• Thalassemics also often suffer from other diseases like jaundice, osteoporosis and heart problems.

 Prevention of Thalassemia:

 Thalassemia is a preventable disorder. If one knows ones thalassemia status, one can be in touch with ones doctor for further counselling and prevent the birth of a thalassemia major child. 

In the Mediterranean countries, where the prevalence of Thalassemia Minors is as high as 17%, public awareness campaigns have led to decreased Thalassemia Major births. In India, media needs to help spread the awareness. Prenatal testing for the Thalassemia gene should be made mandatory.

 How you can help:

• Help spread awareness about the disease.
• Get yourself tested for Thalassemia, especially if you planning for a child.Thalassemia patients regularly need blood.
• Do donate your blood whenever you can. Get your friends and family to do so too. Help hold blood donation camps in your neighbourhood, office, area.
• Support underprivileged Thalassemia children financially.
• Help the volunteers of the Thalassemics India.

For more health-related videos checkout our YouTube page 

May 8 is globally celebrated as ‘International Thalassemia Day’. It is an inherited blood disorder in which the red blood cells contain a reduced amount of haemoglobin, or in severe cases, a lack of haemoglobin in the cells. Thalassemia can range from mild to life threatening and therefore should be monitored.

“Earlier, the numbers were limited to some portions of the country but now thalassemia has a pan India presence mainly because of cross marriages between people from different backgrounds,” Deepak Chopra, president of ‘Thalassemics India’ told IANS.

“Sadly, due to lack of awareness especially among couples who have not yet conceived a child, the numbers will rise further,” he added.

Amita Mahajan, Senior Consultant, Pediatric- Hematology at the Indraprastha Apollo hospital told IANS that every pregnant woman should be tested for thalassemia.

“More than 10,000 kids with thalassemia are born in the country every year just because there is not enough awareness among couples who are getting married,” she said.

The disorder which requires regular blood transfusion can be cured if the patient gets the right donor for a bone marrow transplant. However, the success rate remains awfully low at 3 to 5 percent.

“A patient should first get the right match then there should be advance medical equipments available at the medical centre near the patient and then he should be having deep pockets to get the transplant done,” said Mahajan.

“So, regular blood transfusion is the only option left for many,” she added.

However, with several reports of thalassemic patients given blood infected with HIV and Hepatitis, the experts unanimously agreed that the only the Nucleic Acid Test (NAT) could detect infection in a donor’s blood.

“But the present techniques for testing donated blood in the country are old and fail to detect infections properly,” J. S. Arora, General Secretaryof National Thalassemia Welfare Society told IANS.

“The problem of infected blood arises when a person is compelled to donate blood for money. Though it is banned and illegal but it goes on undercover. So, the chances of getting pure blood from a donor who is doing it for money are very low,” he added.

Chopra said that blood donation has to become a common practice and the dearth of blood makes blood donation a business for some.

“We want our water to be 100 percent pure and our gold jewellery to be 24 carat pure as well but strangely providing infected blood to thalassemic patients,” said Chopra.

A thalessemic patient between the age of one to five years needs one unit of blood every month, between the age of five to ten-two units every month are needed, between the age of 10 to 15-three units are needed every month and an adult thalassemic needs four units of blood every month.

Source: IANS