World Blood Donor Day 2011

World Blood Donor Day 2011

International Thalassemia Day!

Happy International Thalassemia Day to everyone! specially to the Thalassemics! rise and shine.. because you are special =)

Blood Donation Drive

Blood Donation Drive

Note: If you are not in Karachi then visit any Thalassemia Center in your city/country and donate blood on the same day… lets bring change together! =)

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MRI: An accurate method to evaluate iron overload

Courtesy: physorg.com

A research team from Iran investigated the accuracy of T2*-weighted magnetic resonance imaging (MRI T2*) in the evaluation of iron overload in beta-thalassemia major patients. The study showed that MRI T2* is a non-invasive, safe and reliable method for detecting iron load in patients with iron overload.

Iron overload is a common and serious problem in thalassemic major patients. As iron accumulation is toxic in the body’s tissues, accurate estimation of iron stores is of great importance in these patients to prevent iron overload by an appropriate iron chelating therapy. Liver biopsy is the gold standard for evaluating iron stores but it is an invasive method which is not easily repeatable in patients. Introduction of other more applicable methods seems to be necessary.

A research article published on January 28, 2011 in the World Journal of Gastroenterology addresses this question. The authors reported their experience of using T2*-weighted magnetic resonance imaging (MRI T2*) for determining iron overload in beta-thalassemic patients in Iran. They compared liver MRI T2* results in thalassemic patients with their liver biopsy results to determine if it is possible to substitute MRI T2* to assess iron overload in these patients.

The results indicated that the serum ferritin level is not a reliable method for estimating the level of iron overload in thalassemic patients. MRI T2* is a more accurate and non-invasive method which they recommend for measurement of iron load in these patients.

More information: Zamani F, Razmjou S, Akhlaghpoor S, Eslami SM, Azarkeivan A, Amiri A. T2* magnetic resonance imaging of the liver in thalassemic patients in Iran. World J Gastroenterol 2011;17(4): 522-525. http://www.wjgnet. … 7/i4/522.htm

 

Iraq’s first lady awarded for helping Thalassemia patients

Courtesy: pukmedia

The Kurdistan Thalassemia Care Center awarded those figures including Iraq’s First Lady Hero Talabani who sincerely contributed to provide aid and donation to the patients suffering from Thalassemia in Kurdistan region for 2010.
The awards were given in a ceremony held Thursday at Sulaimani office of the Kurdistan Thalassemia Care Center.

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

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.

FAiTh in TIF Magazine =)

Alhamdulillah FAiTh [Fight Against Thalassemia] is gaining its place in people’s life, heart, mind and now it secured its position in TIF [Thalassemia International Federation] Magazine

FAiTh featured in TIF Mag

Please click on image for larger view

Ministry launches drive to combat thalassemia

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.”

Tracking thalassemia

Courtesy: expressindia.com

What took off as a class project for these six students of Wilson College is no more the same

It was a just a class project, with all its hesitations and disappointments, that turned big for these 20-year-olds. For they helped spread awareness about thalassemia, a blood-related disorder, among 600 people in just two days.

The six students of Wilson College had picked up the disorder for their final-year contemporary issues project. Nehal Tiwari, one of them, says, “We wanted to target youngsters who would probably be thinking of starting a family. We contacted five-six call centres that usually have a young workforce and sought permission to meet workers. We were denied permission.” Adds Manish Usapkar, “We were shoved off. One man in Thane said we should not teach wrong stuff to youngsters. Some people think that thalassemia is a sexually-transmitted disease.”

Royce Noronha says, “We had prepared a streetplay on the issue, but when we enacted it at Marine Drive not even one passerby stopped to see that.” Adds Nisha Thomas, “Also, the word thalassemia itself is so new, that to just make the person aware about such a thing is challenging.”

But then, the campaign took off. A group member, Leron D’Souza, created a video and put it on YouTube and Facebook, which received over 800 hits. They did a two-day drive too, wherein they spoke to people at Bandra Bandstand, Marine Drive, Girgaon Chowpatty and the like. “At Bandstand, we went behind barricades and enclosures where couples sit and talked to them,” says Royce. “In fact, some people actually thought we are talking about AIDS and HIV… We would move around with flexes on our necks, saying things such as “Are you feeling fit and fine”. Or hang a mirror around our necks and say this person could be a thalassemia patient.”

Nehal says they realised they needed to attract people’s attention. Manish adds, “We would be asked questions such as is thalassemia a planet or some country. People do not have any idea what it is. Once there was a doctor couple at Marine Drive who did not know about the disorder; they thought they did but had no clue about it.”

Aparna Nair says they used to join people jogging at Marine Drive in the morning just to talk to them. “We orgnanised innovate games like dart at a suburban college where nobody would even stop and listen to us. People would come and play and then we could talk about thalassemia.”

Manish says they did not initially believe in the concept. The ‘moment’ came when the group took out some thalassemia-affected children to MacDonalds for a treat. “I was told that there will be affected people aged 12 to 21, but I could not find any 21-year-old. These people have stunted growth and perhaps they do not look their age. Yet I was stunned how normal they look,” says Nisha.

“Once I saw a patient who was having blood transfusion, which is the only way they can stay alive; and here he was eating Kurkure and watching TV. Instead of feeling pity, I felt I should give them a well-deserving life,” adds Aparna.

For the group, thalassemia is now a life-long cause. “We will keep coming back to this issue through the NGO ‘Think Foundation’ that fights for this cause, says Manish.

Meera turns princess for Burj Khalifa wish

Courtesy: emirate247.com

It was a dream-come-true for Meera, who suffers from Thalassemia but has a wishlist. Floating in like a princess, the five-year-old from Kalba had a day she, and all around her, would remember forever when she walked into Burj Khalia – the world’s tallest tower.

Treated like a true princess from her favourite fairy tale, Meera could fulfill her wish thanks to Make A Wish Foundation that takes care of children like her.

Surviving with regular blood transfusion since she was six months old, for which she is brought to Sharjah every three weeks, Meera will have lots to talk about over her visit to the world’s tallest tower.

In pain, most of the time, Meera had reasons to smile, laugh and be happy like the little princess in fairy tales and for once forget she would soon have to endure the blood transfusion procedure that could last up to seven hours at a time.

Her elated mother said: “Meera is the second child in our family. We have two other healthy kids, Mohammed aged 7 years and Mariya aged 4 years.”

Always wanting to be a Snow White or Cinderella, this trip to Dubai is special for Meera and her mother.

“She has a wide imagination. She is a very loving and caring kid. She is humble and she loves taking care of other kids, and she is very smart and intelligent. Despite her illness, she is very determined in such a young age to fight the disease and live a happy life. She is older than her age,” says her mother who is always there to take care of the little child.

“We surprised her at the hospital. She didn’t know that today she will live like a princess. A limousine picked her up, she wore a beautiful dress and crown. She distributed gifts to other kids at the Thalassemia Centre and she went atop Burj Khalifa, everything making her so happy.”

The foundation is chaired by Shaikha Shaikha bint Saif Al Nahyan, Chairman of Make A Wish Foundation and wife of Shaikh Sultan bin Khalifa bin Zayed Al Nahyan, the Consultant of the President.

In 2010, the foundation fulfilled the wishes of 180 children. Among them, 100 wishes were all fulfilled by Shaikh Sultan.

Dr Essam Dohair, Vice Chairman, Make A Wish Foundation in UAE said that the main aim of the foundation is to fulfill the wishes of children who suffer from life threatening disease and who are aged between 4 to 14 years.

Children suffering from life-threatening conditions such as cancer, thalassemia, serious disabilities, birth deformities are provided everything to fulfill their wishlist.

“We have direct orders from the Chairman to fulfill the wishes as soon as possible. This is so after a girl died before we were able to fulfill her wish. This made the Chairman very sad, and since then, we do our best to fulfill all the wishes quickly,” Dohair said.

He pointed out that the wishes they fulfill are not only for national, but also expatriate children.

“All the wishes which we fulfill fall under three main categories: 1. I want to see – where we take them to places such as Disney Land; 2. I want to own – where they want to obtain things like laptops or cameras; 3. I want to meet: where they want to meet the President His Highness Sheikh Khalifa bin Zayed Al Nahyan or His Highness Sheikh Mohammed bin Rashid Al Maktoum, UAE’s Vice President, Prime Minister and Ruler of Dubai, or His Highness Sheikh Mohammed bin Zayed Al Nahyan, Chief of UAE’s Armed Forces and Crown Prince of Abu Dhabi.”