Grandma struggles for 8-year-old granddaughter suffering from thalassemia

March 4, 2011

Courtesy: sify.com

New Delhi: It did not matter that she could not understand English or could hardly pronounce ‘cord blood’, Krishna Devi Agarwal was only determined to end the suffering of her 8-year-old granddaughter, suffering from thalassemia since birth.

A resident of Patna in Bihar, the 60-year-old crisscrossed the country and visited countless hospitals during the last seven years until she learnt about stem cell therapy using cord blood which finally relieved Harshita from undergoing regular blood transfusions.

Harshita, a student of Delhi Public School in Patna, underwent a cord blood stem cell transplant last year in a hospital here and till date she has not undergone blood transfusion, a must for thalassemia patients.

“Her grandmother has been very influential in her treatment. She left no stone unturned to get her grand-child get relieved of the disease,” said Mrinalini Chaturvedi, medical director of Cryobanks International India, a private cord blood stem cells banking company that helped save Harshita’s life.

“I never read a newspaper but started going through them looking for some treatment opportunity for my grand daughter. And from one such newspaper I came to know that there is a relief in stem cell. I am thankful to ‘code bulaad (cord blood) kiyaro bank’ for the new lease of life they gave to my child,” she said.

Harshita is the first successful case of treatment of thalassemia child with cord blood stem cell of Cryobanks International India.

Harshita’s parents had stored their new-born son Yuvraj’s cord blood with them which was finally transplanted last year.

“She (Krishna) was confident that she would get Harshita relieved of the disease. She would accompany her to the hospital for blood transfusion. She would strictly follow the doctor’s instructions. She would be present before the doctor whichever day and time he would ask her to be there for Harshita’s treatment. She would voluntarily make an effort to know more about the disease and opportunities for treatment,” said Satya Narayan Agarwal, Harshita’s grandfather.

Army Hospital Research and Referral has also successfully treated many such thalassemic patients with help from bone marrow stem cells. Another private cord blood bank, Life Cell International, has helped in such treatment.

Thalassemia is a genetic blood disorder where the child has defective red blood cells and has to take repeated blood transfusion to survive and maintain hemoglobin levels.

Survival of such people is jeopardised by complications of the organ damage and sever anaemia. They have to take repeated medications to prevent accumulation of iron in the body. According to the ICMR, till date there are over one lakh thalassemic people in the country.


Ministry launches drive to combat thalassemia

January 16, 2011

Courtesy: indiatimes.com

Do you carry thalassemia gene? The Union health ministry will soon find out. Recognizing the tremendous burden of thalassemia, the ministry has decided to launch a national programme to combat this genetic blood disorder.

In thalassemia patients, the bone marrow does not form normal red blood cells. Hence, the patient’s survival depends on repeated blood transfusions throughout life — once in every 2-4 weeks.

Union health secretary K Chandramouli told TOI that the urgency of such a national programme was unanimously accepted by state health ministers during a recent meeting in Hyderabad.

“The modalities of the programme will now be worked out in consultation with experts,” Chandramouli said. He added, “The programme will look at testing blood samples of adults before they marry. If two adults with the thalassemia gene marry, chances are very high of their baby being born with the disease. Since, majority can’t afford its treatment, we will soon start a pilot project.”


Ashmit, Veena to tour India, Pak together

January 16, 2011

Courtesy: indiatimes.com

They were a controversial couple on Bigg Boss Season 4 and made headlines for their public display of affection. Ashmit Patel and Veena Malik are in the news again. The two have decided to work together, but for a cause.

Ashmit will help Veena carry out awareness campaigns for her charity in Pakistan that works for thalassemia patients. The two will travel across India and Pakistan to bring awareness about the disease among the people.

A thalassemia minor himself, Ashmit confirmed the news, “We are indeed going to carry out this program. We also plan to provide monetary help to the patients, as the treatment is very expensive. The other details are yet to be worked out about this drive.”

We wish them all the best in their noble cause.


Hba2 should be a must before marriage

January 16, 2011

Courtesy: medindia.net
Thalassemia is a deadly genetic disorder in which child gets blood to transfuse every 3-4 weeks for the whole life. Every year 12000 children are born with thalassemia ( we are the largest thalassemia children producer in the world ) and around 50% of them are not able to celebrate their 5th birth day. the main cause behind it is only our ignorance ( dont wait for our governmnent to come forward ).
The easiest way to retard the birth rate of thalassemia children is one has to go for thalassemia screening before the MARRIAGE or the horoscope matching. In this process youth can play a good role , If they insists for the thalassemia screening the birth rate can be easily lowered down. Cyprus is an example where the birth rate is ZERO ( earlier they were top thalassemia children producer in the world ).
Our youths can play and must play the lead role.

Join my mission to make our country “” thalassemia free. “””


Stem cell transplant cheap in India, but very few centres

January 16, 2011

Courtesy: bombaynews.net
Stem cell transplant in India costs a fraction of what it does abroad but the country has very few centres where the procedure can be done and not enough dedicated medical staff, says an expert.

Stem cell transplant, a process by which new cells are introduced into damaged tissue in order to treat disease or injury, has shown promise in treating various kinds of diseases, including some cancers. However, there are only 10-11 centres in India where it can be done, says Lalit Kumar, professor of medical oncology at the All India Institute of Medical Sciences (AIIMS) here.

A stem cell transplant can cost up to Rs.1 crore (approx $223,000) abroad, depending on the type of procedure, and the patient is asked to deposit the full amount before the transplant, Kumar told IANS.

In comparison, in India it costs Rs.10-20 lakh in private hospitals, while in government hospitals it is much cheaper – Rs.3-6 lakh – depending on the type of procedure, he said.

According to Kumar, stem cell transplant has shown 50 percent success in treating certain kinds of cancers and even more in other major conditions like beta thalassemia, a genetic blood disorder, and aplastic anaemia, a condition where bone marrow does not produce sufficient new cells to replenish blood cells. Stem cell transplant has shown 70-80 percent success in treating non-malignant diseases like aplastic anaemia.

Stem cells can be taken from siblings or family members after tissue matching, known as allogeneic transplant, from the patient’s blood, known as autologous transplant or can be harvested from a newborn’s umbilical cord, which is a rich source of such cells.

Among the major hospitals that carry out stem cell transplant are AIIMS and the Army Hospital in the capital, the Tata Memorial Centre and Jaslok Hospital in Mumbai and CMC in Tamil Nadu’s Vellore town. There are more than 500 centres in the world where stem cell transplant is done, he said.

‘Around 500 stem cell transplants are done in India in a year, which is very small compared to the need. We need many, many more centres in India,’ Kumar said.

India also needs to set up more stem cell banks and a registry of donors, like in the West, with complete information such as blood group and tissue matching to make it easier for matching for a stem cell procedure, he said.

‘A registry of donors is useful when a match can’t be found in the family of the patient for stem cell transplant.’

Besides setting up more stem cell transplant centres or setting aside an exclusive block in a hospital for the purpose, more trained doctors are needed as well as hospital staff, he feels.

‘There should also be more awareness among physicians so that they refer the patients at the right time for a stem cell transplant,’ he said.

Kumar said there is a better success rate in the case of thalassemia if the patient is referred by the treating doctor for a stem cell transplant early.

He added that more awareness should be spread about the procedure among the patient’s family and the community.

‘There is a lack of awareness about stem cell transplant among people. Many people asked to donate stem cells, even among the patient’s own family, feel they will get weakened by donating. And this is also true among the educated.

‘Stem cell donation is just like blood donation,’ Kumar said.

AIIMS has its stem cell transplant wing on the seventh floor of the cancer department. There are nine beds, and they are generally full, the doctor said.

The hospital does about five procedures in a month. For a procedure called allogeneic, where a genetically similar donor’s tissue is used, like a sibling or even an unrelated donor, great care has to be taken before and after the procedure.

In some cases, despite matching with the donor, the patient can reject the graft. Then it involves a long process of giving immunosuppressants, or medications that help prevent organ rejection in transplants and reduce inflammation, or steroids to help the patient in accepting the transplant, he said.


Bank staff donate 100 units of blood

December 31, 2010

Courtesy: timesofindia

A nationalized bank with a branch in the city organized a blood donation camp at its office in Sarabha Nagar where its employees donated 100 units to mark 100th foundation day on Tuesday. The employees also donated one-day salary to the Prime Ministers Relief Fund.

The camp was organized in association with an NGO ‘Salaam Zindagi Foundation’ working for thalassemic children in the city. The NGO has sponsored 61 such children and vows to support all the needy children with the disorder. Established by Sir Sorabji Pochkhanawala on December 21, 1911, Central Bank of India celebrated its 100th foundation day on December 21. All the staff members of the Ludhiana region paid obeisance to the founder.

President Kamal Khullar and Sarabha Nagar Traders Association general secretary Davinder Singh appreciated banks efforts and declared to hold a mega blood donation camp in the coming month so that maximum patients of thalassemia could the supported with blood.

Salaam Zindagi Foundation general secretary Anurag Kalhan thanked members and office-bearers of bank union who made all efforts and motivated the members.

The blood bank teams of Guru Teg Bahadur Hospital and Deep Nursing Home were also present.


Genetic infertility treated successfully at Mumbai hospital

November 24, 2010

Courtesy: dnaindia.com

A woman with a rare genetic disorder ‘Robertsonian Translocation’, resulting in infertility, has delivered a healthy baby girl at the Jaslok Hospital and Research Center.

“With this first Invitro fertilisation (IVF) using pre-implantation genetic diagnosis (PGD), India joins a handful of countries that have accomplished successful management of this disorder,” Dr Firuza Parikh, Director, Assisted Reproduction and Genetics at Jaslok and former Professor at the Yale University School of Medicine, USA, said.

The baby girl was delivered yesterday at city’s Jaslok hospital, Parikh said adding that this case report was published as a cover article in the peer reviewed ‘Journal of Prenatal Diagnosis and Therapy’ (January- June 2010).

Attributing the success to her team of 40 individuals particularly Dr Prochi Madon, Dr Arundhati Athalye, Mr Nandkishor Naik and Dattatray Naik, Parikh explained, “We are born with 46 chromosomes which occur in pairs. Each chromosome of a pair is a mirror image of the other. Although this harmony ismaintained in nature, an occasional slip results in a translocation.”

“As the name suggests, a segment or an arm of one chromosome transports itself onto another chromosome and one such rearrangement is called a RobertsonianTranslocation after the American geneticist Dr W Robertson,” she said.

“The rearrangement can occur in males and females who do not manifest any clinical symptoms. The problem manifests when the couple tries to conceive,” Parikh said.

“An embryo derives half its chromosomes from the father and half from the mother. Hence if the chromosome with extra genetic material goes into the embryo, the amount of genetic material of that chromosome triples resulting in miscarriage or mental retardation,” the In-vitro fertilization (IVF) expert said.

The embryos were screened using Pre-implantation Genetic Diagnosis (PGD).

Eleven years ago, Parikh and Madon established PGD for genetic disorders for the first time in India at the Jaslok Hospital and Research Centre.

Parikh who led this procedure, said, “PGD requires years of perfection, team work and a thorough knowledge of reproductive biology and genetics. The couple first undergoes IMSI (intracytoplasmic morphologically selected sperm injection).

In this procedure the egg and the sperm are magnified 7000 times. With the help of a sharp pipette a single sperm is injected into the egg and the resulting embryo is ready for PGD when it reaches the eight cell stage.”

“A laser beam swiftly cuts open the shell of the embryo, a fine glass pipette is advanced towards one of the cells of the embryo. Using gentle suction, a single cell is aspirated. This cell is then processed by the genetics team,” Parikh said.

Madon, chief geneticist added, “The cell is put through an overnight procedure called Fluorescence In Situ Hybridisation (FISH), a procedure to zip open the DNA strands and attach coloured probes, to identify the chromosomes of interest.”

In this particular couple, the wife had a translocation between chromosomes 13 and 14. Two embryos underwent the procedure of PGD. This embryo was transferred into the mother’s womb, resulting in the birth of a healthy baby girl.

“PGD is an effective form of treatment for couples at a risk for Down Syndrome and other chromosomal abnormalities, for women approaching 40, those with repeated failed attempts at IVF/ICSI (Intracytoplasmic sperm injection), those women showing poor quality embryos and for severe male factor infertility. It is also helpful in some rare genetic diseases like haemophilia,” Parikh said.

“We are now in the process of setting up a facility for PGD to detect embryos at a risk of Thalassemia. We have also started offering this procedure routinely to couples undergoing IVF/ICSI in order to select normal embryos so that less number of embryos are transferred,” she said.

This will increase the chances of a normal pregnancy and decrease the chances of a miscarriage. This technique is called pre-implantation genetic screening (PGS), Parikh added.


Salman pledges bone marrow to help patients

November 23, 2010

Courtesy: Thaindian.com

Bollywood star Salman Khan’s philanthropic side is well known and now the actor has gone ahead and pledged his bone marrow to help people suffering from life-threatening diseases.

“Donating marrow is a simple act, it’s as simple as donating blood. But this simple act can save the life of someone suffering from blood cancer, thalassemia and other major blood-related diseases,” Salman said in a statement.

“I am pledging my marrow with MDRI (Marrow Donor Registry of India) so that in an emergency, if a patient’s sample matches mine, I can be reached to donate my marrow,” the 44-year-old actor said.

Salman’s charitable foundation Being Human has also joined hands with the Marrow Donor Registry (India) to create awareness of how marrow donors can save lives.

“The more the donors, the more lives we save. So I urge that all of you who are blessed with good health come forward and pledge your marrow so that the less fortunate can benefit from this thoughtful act,” Salman said.

The aim of the initiative is to develop a large pool of voluntary marrow donors for transplants that are life saving for patients suffering from blood cancer, thalassemia, aplastic anemia, congenital immunodeficiency states and other such blood related diseases.


Umang’s Workshop on Thalassemia

November 23, 2010

Courtesy: himvani.com

Shimla. A little fragile frame asks slowly, “Doctor Uncle, can I ever live a normal life? My parents are always worried about me.” One can not believe that Pranjal, who seems to be much less than his age, is eight years old. Aditi looks like a student of 4th or 5th class is a 16 years old girl. She asks, “My growth has completely stopped. What should I do?” These were some of the questions raised by children in Thalassemia Awareness Workshop organized by Umang Foundation; a public welfare trust, in Shimla. Dr. Joseph John, Head, Department of Clinical Hematology and Bone Marrow Transplant at Christian Medical College, Ludhiana was the main recourse person in the programme. Dr. Navin Kakkar of CMC also addressed the children with Thalassemia and their parents. The workshop was supported by Pfizer Limited. Thalassemic children from Shimla and surrounding areas participated in the workshop.

Dr. Joseph John, a renowned expert, said that pre- marriage Thalassemia detection test can check the spread of the disease. He said, about one hundred thousand children with Thalassemia major are born in the world every year out of which 10 to 12 thousand are born in India. This is a genetic blood disorder of very serious nature and patients with Thalassemia major have to survive on regular blood transfusions whole life. The medicines of the disease are also very expensive. He said that Umang Foundation was doing a commendable job in making people aware and supporting the children with Thalassemia.

In his presentation, Dr. Joseph emphasized on the preventive measures and gave an example of Cyprus where Thalassemia had been eradicated through law. He said, “In that country, it is mandatory to show Thalassemia negative certificate in the Church or court to get marriage registered. But in India, it could be done through persuasion as only law can not yield result in such a huge population.” This disease is more prevalent in the northern region including Punjab, Rajasthan, J & K, Haryana, Delhi and West Bengal and Assam, he informed.
According to him, lone substitute of regular blood transfusion for Thalassemic patients is bone marrow transplant. The ideal age for this transplant is between 2 to 8 years and beyond this age, the risk factor goes up. But the cost of such transplant is very high. A patient has to spent any where between Rs. 10 Lac and 15 Lac or more in some complicated cases in India and between Rs.2 to 4 cror in the United States. He said, “One time expenditure on transplant is cheaper than to maintain patient on transfusion and medicine for the whole life. To support the Thalassemic patients who come to CMC Ludhiana for transplant, the Tata Trust has initiated a subsidy of Rs. 3 Lac for the next one year and the patients can get a support two Lac from the Prime Minister Relief Fund. In such cases, success rate is 60 to 80 percent in our country.”

Dr. Navin Kakkar said that if the Thalassemia detection test is not conducted before marriage, the pregnant mother must go for Thalassemia test of fetus in the first three months of the pregnancy. If the test is positive for Thalassemia major, the medical termination of pregnancy could be an option. Both the experts addressed the queries of the patients and their parents

In the beginning, Ajai Srivastava, Chairman of Umang Foundation, while welcoming the guests said that his public welfare trust is the only representative body of children with Thalassemia. He said that during the year 2009, Umang Foundation donated as many as 700 units of blood to the Indira Gandhi Medical College and Deendayal Upadhyaya Hospital in Shimla through camps and emergency donors. This year, till 22nd October, it has been able to donate 675 units of blood to Shimla based hospitals and would achieve the target of donating 1000 units of blood by the year end. According to him, now the Foundation has started supporting the economically weak children with Thalassemia by providing them with medicines. Apart from this, the Foundation is fighting with the government agencies for blood safety and scientific blood banking system in the state.

Yashwant Rai, General Secretary of Umang Foundation informed that next year a state level workshop would be organized in Shimla. He said that the Foundation is conducting small workshops to sensitize the masses about Thalassemia and the problems of the Thalassemic children. In the last, Dr. Joseph John presented gifts to the children with Thalassemia. Kulbir Bhatia, representative of Pfizer Limited, said that his organization would like to support the cause in future also.


First bone marrow transplant performed in Nashik

November 23, 2010

Courtesy: ibnlive.in.com

The city’s first bone marrow transplant has been performed successfully in the district by a leading haematologist on a woman.Bone marrow transplant is a complex procedure like Kidney and liver transplantation and is a boon for patients suffering from various diseases like Thalassemia, Blood Cancer, Myeloma and Lymphomo, Dr Pritesh Junagade, who is also haemato-oncologist, told reporters last night.”The 21-year-old woman from Sangamner, who underwent the procedure, had a plastic anaemia and she needed regular blood and platelet transfusion to keep her alive. Her brother was tested to see if his bone marrow matched. It did and the marrow was removed from the donor and placed in the patient,” he said adding four weeks later, the patients blood count was normal.Dr Junagade, who was in London for seven years and returned to Nashik, said the transplant was carried out successfully at the cost of Rs 5.5 lakh.


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