In A First, Narayana Hrudayalaya Initiates Combined Cord Blood Repository

August 27, 2010

Courtesy: timesofindia

Parents can now donate their newborn’s cord blood for use by any patient or store it for their own use. For the first time, Narayana Hrudayalaya has initiated the combined cord blood repository with both public and private banking facilities.

Cord blood stem cells from a child are used to treat diseases like thalaseemia, a condition where the body has fewer healthy red blood cells and less haemoglobin than normal and Faconi, an inherited anaemia that leads to bone marrow failure. These cells could be used to cure these diseases in siblings and even in parents provided the Human Leukocyte Antigen (HLA) type matches.

If they need to bank a child’s cord blood, a decision needs to be taken about 2-3 months before the expected date of delivery. This helps to collect the cord blood and tissue immediately after delivery. The entire collection process has to be completed within 5 minutes of delivery of the child. The process is simple and can be done by any qualified obstetrician or a trained nurse and does not affect the health of either the newborn child or the mother. Otherwise, it’s difficult to collect and store the cells.

Dr Prem Anand Nagaraja, director, Narayana Hrudayalaya Tissue Bank and Stem Cell Research Centre, Bangalore, said: “Cord blood is obtained from the wasted placenta and umbilical cord at the time of childbirth. After the child is born and the cord is divided, residual blood in the placental circulation is collected using sterile procedures. The remaining umbilical cord is delivered and discarded. Stem cells extracted from this cord blood as well as cord tissue can be preserved for a long time in liquid nitrogen and used to treat many diseases and cure patients.”

Wide application

Four-year-old Mayur is suffering from Fanconi’s anaemia. Since he is the only child and bone marrow from his parents doesn’t match his HLA, he has no option but to go on regular blood transfusions to keep up his platelet count.

His mother Prathibha is now eight months pregnant and antenatal tests show that the foetus is free of the dreaded diseases. Newer indications for stem cell therapy are disease conditions like breast cancer, renal cell cancer, heart disease, spinal injury, Parkinson’s disease and Alzheimer’s disease. Research and clinical trials worldwide prove the success of cord blood stem cells in over 75 such disease conditions.

Dr Sharat Damodar, consultant haematologist, Narayana Hrudayalaya, said: “All these true stories speak volumes about the therapeutic potential of bone-marrow derived stem cells from a matched donor. In the absence of such a donor, cord blood derived stem cells can help cure dreaded hematological diseases like Thalassemia major, Aplastic anemia, Fanconi’s anaemia and over 14 such other conditions.”

A girl who was brought into the world to save her brother

August 27, 2010


This Raksha Bandhan will be the Bhavsar family’s most memorable yet. Their two-year old daughter Richa, who is also the saviour of her elder brother’s life, will tie him a rakhi in what will be his first truly happy festive celebration till date. While most parents will smile on this day, the Bhavsars will shed a silent tear of happiness as their last bundle of joy asks for health and happiness for the brother who owes her his life.

Richa, the Bhavsars’ youngest child, was brought into the world with the hope that she might save her brother from dying. Urvish, the family’s second child and presently seven-years old, was diagnosed with blood cancer at the age of four. Already a thalassemia major, the only way he could be saved was a bone marrow transplant from a sibling.

Little Richa proved the perfect biological match for her brother. Peripheral blood cells were collected from her blood and a stem cell transplant was undertaken on Urvish. The boy underwent a series of chemotherapy sessions and later, a bone marrow transplant in June. The procedure has borne positive results for Urvish. While his blood cells earlier had XY (male) chromosomes, they now have XX (female) chromosomes, which means that the blood flowing in his body is from his own sister Richa!

Dr Sandeep Shah, head of the Bone Marrow Transplant (BMT) department at Gujarat Cancer Research Institute (GCRI), said that this is a medical miracle where a child has been successfully treated for two major illnesses. Urvish’s blood samples show that the transplant has worked. And he will be cured of both thalassemia and cancer.

“However, he is still admitted at the hospital and has currently developed pneumonia. We wish that along with Richa’s bone marrow which cured him, her best wishes now take him towards good health and speedy recovery,” said Shah, adding that by next Raksha Bandhan, the boy is expected to have completely normalised.

Umang Bhavsar, who runs an optical accessories store in Naroda, was shattered when Urvish was diagnosed with blood cancer, after already being a thalassemia patient since he was three months old.The desperate parents, who were told that a sibling with a bone marrow matching Urvish’s would be the only hope, decided to have a third offspring (their first child’s bone marrow didn’t match with her brother’s).

However, their agony was compounded by the fact that Urvish’s younger brother Harsh, now five, didn’t prove a match. “Finally, in sheer desperation, we planned a fourth child, in the hope that we might prove lucky this time, and get a child who will save Urvish’s life,” said Umang. Richa proved a saviour, as her bone marrow matched 100 per cent with her brother’s.

Dr Shah from GCRI said that so far, 118 BMTs have been done in GCRI, of which six were also cord blood transplants. “However, Urvish’s case is the rarest of all as he was cured of both cancer and thalassemia. And success in his case has inspired us to surge ahead with similar others.”

Willing to contribute?

August 23, 2010

It’s so hard to organize a blood camp in Ramadan, not because organizers are fasting and slow BUT people resist donating blood, although one can donate after iftar, but still people think they can get weak after donating.

FAiTh tried arranging a blood camp before Ramadan in different institutes/universities, but couldn’t get permission as they were already booked by some other Thalassemia centers, am glad someone approached them before us :) and I hope they would have get awesome result.

Now FAiTh has decided to organize blood camp after Eid and we are here to ask for help, help in giving us a venue, help in getting us donors.

If you can arrange blood camp in your neighborhood, institute, university, factory, office ANYWHERE, contact us. Just give us venue and donors and we will do the rest!

Hoping to get positive vibes!

Ayesha Mehmood
Official Spokesperson

Before you say ‘qubool hai’

August 23, 2010


When five-year-old Affifa goes to school she carries more than the burden of books on her shoulders. “My daughter was diagnosed with Thalassaemia, a blood disorder, at the age of three,” says Wajahat Ayaz, who works as an engineer at a leading power company in Karachi.

Affifa’s problems are compounded not only by the fact that her body generates an abnormal form of haemoglobin cells, but also by her rare blood group, known as the Bombay blood type. According to Dr Saqib H Ansari, chief of the Thalassaemia programme at the National Institute of Blood Diseases, there are only seven known donors in the country who share this blood group. “Patients like Affifa survive on blood transfusions, but it becomes a huge problem when one has a rare blood group because one can’t find matching donors,” Ansari says.

However, the little girl is lucky for now. Nuzhat, a woman of 40, is providing crucial life support for Affifa. “I will donate my blood to her as long as I live,” says Nuzhat. But what will happen after that?

Ayaz, who earns around Rs30,000 a month and spends close to Rs10,000 of that on monthly treatments for his daughter, says he can only pray that a miracle like Nuzhat will be around. However, that’s not the issue which torments him each day.

“If only I knew that we, the parents, would be the cause of her illness,” laments Ayaz, without saying anything about what he would have done had he known this fact beforehand.

Thalassaemia is a genetic blood disorder which a child inherits from their parents. “If both parents are Thalassaemia minor — that is, they carry the disease but it is not active in their system — there is a 25 per cent chance that their child will be a Thalassaemia major — an active patient –a 50 per cent chance that she will be a Thalassaemia minor and a 25 per cent chance that everything will be normal,” says Ayesha Mehmood, the spokesperson for the Fight Against Thalassaemia (FAiTh). Also, if a Thalassaemia minor’s partner is normal, their children, in all likelihood, will be born free of the disorder.


Ayaz supports recent initiatives taken in certain provincial assemblies regarding the nikahnama law that advocates testing for blood disorders like Thalassaemia, Hepatitis C and HIV/AIDS in couples before they marry. He suggests the government should make it mandatory to mention blood types on national identity cards so that potential donors can be identified.

But so far the Khyber Pakhtunkhwa provincial assembly is the only legislative body which has passed a bill making it mandatory for couples to carry out Thalassaemia and Hepatitis C tests before the marriage takes place. The law does not ban couples from getting married if they find out they are both, for example, Thalassaemia minor carriers, but it gives them the advantage of knowing what they’re getting into. Meanwhile, the Sindh Assembly has to date only passed a resolution urging the federal government to consider making such tests compulsory.

On July 08, 2010, the Punjab government’s Local Government and Community Development Department proposed eight amendments to the nikahnama law; these included complete medical check-up reports prior to marriage. However, the amendments were criticised because of the caveat that the nikahnama document must also be signed by the parents of the consenting adults and were consequently withdrawn.

Member of the National Assembly Sherry Rehman has strongly criticised the Punjab government’s move. Rehman fears the measure might increase the number of forced marriages in the country. “Having parents sign the nikahnama would have meant the return of the wali system for women. The Lahore High Court has a ruling against it,” she says. She added, however, that she was all for testing couples for disorders before marriage and would strongly advocate such a bill.

Meanwhile, Masood Alam, who is about to get married this year, voices another concern. He says that even if blood testing before marriage becomes federal law, it would be hard to convince families that it is a healthy measure. “I and my fiancée may agree, but our families might not want us to get tested because of social pressure and superstition,” Alam says.

Even Nuzhat, Affifa’s donor, says that girls in Pakistan already face a lot of problems getting married and the proposed changes to the nikahnama law may become an added hurdle.

Dr Ansari proposes a solution. “We can follow the Iran model, where the man is asked to get tested first,” he says, adding that the woman only need be tested if the man is found to be suffering from, for example, Thalassaemia minor.

Also, families can be convinced about the benefits of testing with a little persuasion, says Shahzad Shah, who married in 2009 and got himself and his fiancée tested before marriage. “After we told our families about the advantages, they themselves took us to get our blood tests done,” Shah says. He adds that today he is a proud father and his daughter has no genetic blood disorder.

Religious scholars say that while conducting blood tests is not a necessity before marriage, according to Shariah law there is no harm in doing so. Darul Uloom Karachi’s Mufti Asghar Rabbani and Jafferia Alliance’s Maulana Sheikh Hasan Salahuddin say tests can help identify problems that an unborn child might face, because in the end, the child has to suffer the consequences.

Work on genetic diseases centre to begin next month

August 22, 2010
Courtesy by:
Work on a new genetic diseases centre is to begin next month, health officials announced yesterday.
Once completed, the centre will treat patients suffering from sickle cell anaemia and thalassemia, as well as other genetic diseases.

During a meeting yesterday, chaired by Undersecretary at the Ministry of Health Dr. Abdulhai Al Awadhi, officials discussed the medial services currently provided to sickle cell anaemia patients and the requirements for the new centre.

Al Awadhi noted that a special room in the SMC’s Accident and Emergency Unit as well as two full wards within the hospital, have been allocated solely to treating sickle cell anaemia patients.

He added that the hospital is completely transparent in its operations and allows members of the Bahrain Society for Sickle Cell Disease Patients Care to visit these wards.

During the meeting, the heads of several SMC departments warned of a lack of medical staff and increasing pressure on nurses and doctors as a result of larger numbers of  patients seeking treatment at the SMC.

Al Awadhi revealed that around 1,000 patients seek treatment at the SMC’s Accident and Emergency Unit every day and this has led to a waiting list for patients as the unit is not equipped to handle such a large number of patients.

The Health Ministry has launched several initiatives to help curb the incidence of genetic diseases amongst Bahraini citizens. One such initiative has been the introduction of mandatory pre-marital screening for all Bahraini couples planning to get married.

Azersun holds blood drive during Ramadan

August 22, 2010

Courtesy by:

The Azersun Holding began its fourth annual Ramadan blood drive today.

Employees of the Imishly Sugar Plant, Bilasuvar Canning Factory, Natural Greenland and A.S.I.B. – Agro took part in the campaign, Azersun told Trend

The blood drive was organized together with the Health Ministry under the slogan, “Donate Blood, Save Lives.” The campaign aims to help patients suffering from thalassemia.

A similar blood drive was held on Fight Thalassemia Day in May. Over 200 Azersun employees took part in the campaign.

Newborns and their power to save lives

August 22, 2010

Courtesy by:

Doctors say blood obtained from a newborn’s umbilical cord can be used to treat many blood diseases.

“Stem cells extracted from this cord blood as well as cord tissues can be preserved for a long time and used to treat many diseases and cure patients,” said Dr Prem Anand Nagaraja, director of Narayana Hrudayalaya Tissue Bank and Stem Cell Research Centre.

Dr Sharat Damodar, consultant haematologist at Narayana Hrudayalaya, said in absence of a matched donor, stem cells could help cure dreaded heamatological diseases such as thalassemia major, Aplastic anemia, Fanconi’s anemia and 14 such conditions.

Four-year-old Mayur, diagnosed with Fanconi’s anemia, has no sibling (to donate bone marrow) and the marrow from both his parents does not match his HLA. He has to depend on regular blood transfusion to keep up his platelet count. But there is hope for him. His mother is eight-month pregnant and antenatal tests have shown his yet-to-be born sibling is free from Fanconi’s anemia. Mayur can get cured from the stem cells obtained from his younger sibling’s umbilical cord. “Cord blood obtained from the wasted placenta and umbilical cord at the time of childbirth is collected using sterile procedures,” said Dr Nagaraja.

The decision to use a child’s cord blood is made three months before the expected delivery date.

Cord blood is collected immediately after delivery and the window of opportunity to collect and store them is very small. The entire process has to be completed within five minutes of the delivery.

Thalassemia International Conference 2011

August 18, 2010

Dear Friends,

As many of you know FAiTh group – [Fight Against Thalassemia] has been engaged in arranging blood camps, awareness camps and free screening. is the only website in Pakistan about Thalassemia, which is updated and running successfully.

Since last year FAiTh is trying to attend every conference and seminar related to Thalassemia to represent Pakistan and Thalassemia patients of Pakistan.

International Conference is going to be held in May 2011 in Antalya – Turkey (details you can read on, I want FAiTh to attend and represent Pakistan!

But for that I need your support, I can’t do anything alone, need your contribution! 🙂

Contribute in it via

-Ayesha Mehmood
Official Spokesperson

Abdul Basit – Youngest Pakistan Army Soldier

August 15, 2010

On the 63rd Independence day Master Abdul Basit a 15 year old boy made a history to become soldier of Pakistan Army for a day. The young, patriotic lad, who is suffering from blood cancer had expressed his desire to Chief of Army Staff, General Ashfaq Parvez Kayani through an NGO “Make A Wish Foundation” that he wanted to be soldier of Pakistan Army, may be for a day. Chief of Army Staff, General Ashfaq Parvez Kayani took special interest and allowed the child to become a soldier for a day and spend time in a unit on the Independence Day of Pakistan.

Master Abdul Basit, though very weak and fragile, because of his ailment put on the uniform like a professional soldier and reported to unit of Punjab Regiment at Malir Cantt Karachi. The young soldier was warmly welcomed at the unit. Later, Master Abdul Basit spent a busy day with officers and men of his unit.

Master Abdul Basit after a day’s work with soldiers said that his life time dream to join Pakistan Army has come true and he cherished every minute spent with the soldiers.

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Thalassemic teenager ‘joins’ Pakistan Army

August 15, 2010


A 15-year-old boy suffering from thalassemia made history on the 64th independence day of Pakistan by joining the armed forces for one day, media reports said.

Abdul Basit had expressed his desire through an NGO to join the Pakistan Army as his life’s dream.

Army chief General Ashfaq Parvez Kayani, taking special interest in the boy’s wish, allowed him to join armed forces for a day Aug 14.

The boy reported to a unit of the Punjab Regiment in Karachi’s Malir Cantt early morning and went through all the drills with other soldiers. He also took part in the flag-hoisting ceremony.

After spending a busy day in the regiment, he was presented with a certificate by the General Officer Commanding, Maj. Gen. Asfand Yar Khan.

Basit, though very weak and fragile because of his ailment, put on a military uniform like a professional soldier, the Associated Press of Pakistan said.

A jubilant Basit said that his life-long desire had been fulfilled and he would cherish every minute of this day spent as a soldier for the rest of his life.

His father Abdul Khaliq said he never imagined that his son’s wish could be fulfilled like this. He thanked the army chief and NGO Make a Wish Foundation for making it possible. Amongst Khaliq’s six children, three are thalassemia patients.

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