Bid to hike voluntary blood donation

Courtesy by: timesofindia

JAIPUR: Rajasthan mainly depends upon replacement donors to meet blood requirement for transfusion. However efforts are being made at government

and individual levels to improve the participation of voluntary donors. The Swasthya Kalyan Blood Bank and Thalassemia Research Center released a reference guide for voluntary blood donation on Saturday.

The guide has specifically been targeted to the role of non-government organization. “A better understanding of the blood donation process and importance of voluntary donation will help these organisations to convince more people to come forward for this noble cause,” said Dr S S Agarwal. Doctors at the blood bank said under pressure of replacement blood donation at times even unsuitable people come forward to donate and practices like professional donors increase. As there are no way to produce blood, voluntary donation must be increased.

Blood drive on tap to help girl Peyton Green, 3, needs a blood transfusion every three weeks to survive

Courtesy by: phillyburbs.com

FLORENCE – Peyton Green may seem a little shy at first, but she’s as courageous and strong-willed as the Disney princesses she adores.

The 3-year-old has Diamond Blackfan anemia, a rare blood disorder that prevents her bone marrow from making red blood cells, which carry oxygen through the body.

Peyton has to receive a blood transfusion every three weeks to survive.

“She’s very brave,” said Ashley Green, Peyton’s mother. “She’s our hero.”

On Wednesday, Green, husband Thomas and the American Red Cross will hold a blood drive at the Florence Fire Department on Firehouse Lane from 1:30 to 7:30 p.m. to help treat the disorder.

“This is our second blood drive,” Green said. “We had one in May and there was a really good turnout. We collected 34 units of blood, so I decided to try and do it every six months.”

According to the Diamond Blackfan Anemia Foundation, patients with the disease can live long and healthy lives with appropriate medical treatment.

Blood transfusions are one of two common forms of treatment. The other, a corticosteroid medication, forces the bone marrow to make red blood cells, but Green said it didn’t work for Peyton.

Patients may elect to undergo a bone marrow transplant, but the foundation considers it a risky and dangerous procedure and Green said it’s the absolute last option for her daughter.

Green said Peyton was diagnosed with the disorder when she was 8 weeks old.

“She stayed in the hospital for seven days and had five blood transfusions,” she said. “They confirmed her diagnosis with a bone marrow biopsy.”

The biopsy revealed unusually low hemoglobin levels.

“They found her hemoglobin to be 2 (grams per deciliters),” Green said. “A normal level would have been 10 to 13.”

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Green said Peyton has gone as long as four weeks without a transfusion but can’t risk waiting longer than that.

“If she does (wait four weeks), her hemoglobin will go even lower. She becomes irritable and she won’t eat and her bones hurt,” Green said.

But that wasn’t the case during an interview at the family’s home Friday. Peyton chased her new puppy around the living room and jumped into her mother’s arms. Her most recent transfusion was Thursday.

Peyton gets her transfusions at Robert Wood Johnson University Hospital in New Brunswick. Because they cause an elevation in her iron levels, Peyton must also take medication to remove excess iron from her body.

About a quarter of the people with Diamond Blackfan anemia have a known genetic cause, according to the federal Centers for Disease Control and Prevention, but Green said there are no other known cases of the disease in her family.

“I couldn’t understand why it happened to my child, especially after having a perfectly healthy son,” Green said. “It took me a long time to understand. I’m getting more comfortable with making it public. It’s important to get the word out that this exists and it’s horrible. It’s hard for someone to live with it.”

Green said she decided to document Peyton’s progress through an online journal at www.caringbridge.org/visit/peytongreen28.

“I’m totally willing to get the word out,” she said.

Green said 21 people have already committed to Wednesday’s blood drive and she’s hoping for more.

“(Blood drives) are so important for any disease that requires a blood transfusion, like sickle cell or thalassemia,” she said.

For more information about the disease and the foundation, visit dbafoundation.org.

Cord blood stem cell transplantation cures minor girl

Courtesy by: samaylive

Chennai, Sept 16 An eight-year-old girl suffering from Thalassemia has been cured by ‘cord blood stem cell transplantation’ at a hospital here.

The doctors used her younger brother’s cord blood stem cells for transplantation and the hospital authorities claimed it was the first time this method was practised.

Thalassemia is a genetic blood disorder in which the body makes an abnormal form of hemoglobin that results in excessive destruction of these cells and causes severe anaemia that can occur months after the birth. The patient then has to undergo monthly blood transfusion.

Mayur Abhaya, president and executive director of LifeCell International, a leading stem cell bank, told reporters here that Thamirabhurani was suffering from Thalassemia for the last six and a half years.

She went through painful blood transfusion and medication until the stem cell Cord blood stem cell transplantation cures minor girl, he said.

“The stem cell transplantation was recently done by Dr Revathi Raj at Apollo Hospital and it helped the girl get rid of Thalassemia,” he said, adding doctors had recommended that the patient start on iron reducing medication initially.

“The doctors then asked her parents to consider another pregnancy and go for umbilical cord blood stem cell banking”, he added.

Raj said a pre-natal test confirmed that the foetus was not affected with Thalaseemia.

Need to tap potential of wonder stem cells

Courtesy by: timesofindia

VARANASI: Stem cells are the wonder cells and there is a growing need to spread awareness about the importance of these cells to realise their

potential, says Dr CV Nerikar. Nerikar is the former blood transfusion officer, Nagpur Medical College, and the chief executive officer of the country’s only stem cell bank. He was speaking at a continuing medical education (CME) programme in the city on Sunday evening.

The programme was organised by Varanasi Obstetrics and Gynaecologists Society (VOGSI). As he stressed on the need to promote stem cell banking in the country, its advantages were also emphasised. “These cells are preserved at very low temperature (-196 degree Celsius) and can be used for nearly 130 years (two generations),” he said on the occasion.

“The stem cells have inherent capacity to multiply and regenerate into all specialised cells of the body and could be used in multiple life threatening diseases, including genetic disorders,” informed Dr Neriker. Stem cell transplant has successfully treated complicated and life threatening diseases including blood cancer (acute leukemia), thalassemia, blood disorders and other immune deficiencies. “Currently, stem cell research is also going on a number of diseases including spinal cord injury, cardiac diseases, diabetes and stroke,” he added.

He also said the umbilical cord blood is the easiest source of retrieving stem cells and the blood that is usually thrown as wastage should be preserved for complex diseases, especially for treating genetic disorders in the family.

President, VOGSI, Dr Amod Prakash and other senior obstetricians and gynaecologists were also present on the occasion.

5000 children born with thalassemia annually in Pak

Courtesy by: geo.tv

PESHAWAR: Over 5000 children are born with transfusion dependent thalassemia annually in Pakistan and 65 percent of them belonge to NWFP.

According to the three yearly report of Hamza Welfare Foundation in Peshawar the NGO has provided 14,543 patients with healthy blood.

Presently 550 patients are registered with the organisation. Out of which 455 patients are suffering from thalassemia; 58 from haemophilia and 37 from blood cancer. The majority of the patients include minors.

The Foundation is making efforts for facilitating free medical services to the poor and deserving; and a large number of people are supporting the organisation in this regard.

Team runs road race for twin girls in Bridgewater

Courtesy by: enterprisenews.com

BRIDGEWATER — To the naked eye, Alexia and Kailyn DeBoe appear to be normal, healthy 8-year old-girls who love SpongeBob, Hannah Montana, cheerleading, dancing and summer camp when, in fact, the girls have a rare blood disorder called thalassemia, which requires monthly blood transfusions to keep them alive.

The girls are the daughters of Anthony and Bridgette DeBoe of Bridgewater.

“They are getting to that age where their friends are asking them why they miss school once a month and why they go to the hospital,” said Anthony. “They tell them they get transfusions that, because of their illness, they need to have or they would die. They still don’t know the full details of what it is and why, but they know they need them.”

According to www.thalassemia.org, thalassemia is actually the name of a group of genetic blood disorders, the most common treatment for which is red blood cell transfusions which the twins undergo monthly. These transfusions are necessary to provide the girls with a temporary supply of healthy red blood cells with normal hemoglobin capable of carrying the oxygen that the girls’ bodies need.

There is no cure.

Today, a team of 12 runners of the Bridgewater-based “Running for the Twins” team will run the 7.1-mile Falmouth Road Race to raise money to help offset expenses not covered by health insurance.

The team is comprised of family and friends, and was created five years ago after a conversation on the commuter train between Anthony DeBoe and Keith Buohl, whose family founded the team.

“We started the team because we are friends with the DeBoes and, if something like this happened to our family, we would hope our friends would want to help us out as well,” said Buohl.

The team has raised $46,000 over the last four years from friends and family as well as charitable donations from Dale Higgins at the Bridgewater Festival of Lights, the Bridgewater Board of Selectmen, and corporate sponsors such as Parc Blvd Inc., which owns Bridgewater’s Dunkin Donuts.

“There’s nothing like the feeling of coming over that hill and seeing the faces of my family and the DeBoe family waiting for me at the finish line,” said Buohl.

The twins say it’s fun to be there when the runners finish the race.

“It’s fun when Keith stops and talks to us and then he runs and finishes the race,” agree Lexi and Kailyn.

“It is hard to put into words how much Keith and his family doing this for the girls means to us,” said Anthony. “To know you have people in your life willing to take time out of their busy schedules to help the girls is very special to us. Words can’t describe our appreciation for all that they do.”

To support Running for the Twins, donors can send a check payable to the “Alexia & Kailyn DeBoe Family Fund” to Keith Buohl at 10 Fieldcrest Drive, Bridgewater 02324. For more information or to schedule a donation pick-up, call 508-279-3259.

World Blood Donor Day

Courtesy by: thenews.com.pk

Thalassemic kids in need of frequent donations

Sunday, June 14, 2009
Bureau report

PESHAWAR: The Hamza Foundation Blood Services Saturday urged the masses to donate blood to organisation so as lives of innocent children suffering from thalassemia could be saved.

Addressing a press conference at the Peshawar Press Club, chairman of the foundation Ejaz Ali Khan said due to the military operation in certain areas of the province, the foundation could not collect blood for thalassemia patients.

He also demanded of the government to announce extra marks to the students who donate blood. “In this way we will be able to persuade the students to donate blood,” he said.

Flanked by Dr Fakhar Zaman, medical director of the foundation, he said that the Hamza Foundation had 539 registered patients of thalassemia, haemophilia and blood cancer.

Beside, he said, the foundation also provides blood to other patients free of cost. “We need 700 blood bags monthly to cater to the needs of patients registered with the foundation,” he said.

Dr Ejaz said that the medical science had confirmed that a healthy person, from 18 to 50 years of age, could donate blood four times a year. He said that blood donation also diminishes the possibility of hepatitis and AIDS.

He said that the World Donors Day would be observed today (Sunday) to create awareness among the people to donate blood. He said that presently about 80 million people across the world donate blood amongst them 39 per cent are from under-developed countries.

He said that in Pakistan 70 percent of the donated blood is given to thalassemia patients.

Dr Ejaz said that during the last three years the Hamza Foundation collected blood from over 12,000 volunteers, majority of which comes from student community.

Blood pricing still an unregulated practice in Guj

Courtesy by: indianexpress.com

Even as blood banks across the state are trying to cut down on blood replacement, with many even adopting a clear ‘no replacement’ policy, there seems to be a wide disparity on blood pricing in the state.

At present, Gujarat has no central pricing per unit of blood. The nodal government agency that takes care of licensing, quality and verification of staff qualification required for blood banks, is the Gujarat State Council for Blood Transfusion (GSCBT).

However, the cost variation in blood banks is driven by overhead pricing in the absence of a price control policy.

One of the objectives of the National Blood Policy 2002 is to gradually phase out the practice of replacement donors in a time-bound programme to achieve 100 per cent voluntary non remunerated blood donation programme. The policy also talks about the National Blood Transfusion Council providing guidelines on non-profit cost recovery as well as a subsidised system.

Blood replacement involves engaging of professional donors, which aggravates chances of infection and contraction of blood-borne diseases.

It has been targeted to bring it down to zero. However, in the absence of any regulation that spells out an upper limit for pricing, blood prices in the state range between Rs 250 and Rs 750 per unit; testing of Thalassemia in private blood banks could be as high as Rs 900.

“The high charges levied on blood components are due to the chemicals used for testing, but Indian Red Cross Society (IRCS) blood banks charge concessional rates due to government grants,” said a member of the Gujarat branch of the IRCS on condition of anonymity.

IRCS blood banks across Gujarat have already recorded a 70 per cent decrease in blood replacement in the last two years when rest of the blood banks encourage more and more voluntary donations to bring down replacement.

“At present, there is no regulation over blood pricing. The difference of pricing is probably because of economy of scale as testing; storage and maintenance costs decrease in larger blood banks as compared to smaller ones. That is why probably there is a certain amount of freedom of pricing in the absence of an upper limit,” said Air Marshal P K Desai, the managing trustee of Missameal Trust that works in coordination with the IRCS for its various programmes.

With the replacement being brought down, the chances of increase of professional donors may become real once again, given the simple economics behind it.

However, Joint Director of GSCBT, Dr Rajesh Gopal, said: “While the apprehensions may be partly justified, but it will put a check on professional blood donation, which is illegal. Moreover, blood banks encouraging such donations also become culprits in the eyes of law. While we have very strict regulations to monitor this, the parameters to set up a blood bank are so thorough that profiteering will be controlled.”

Moreover, with inspections from a national expert identified by the Union government and two teams from the GSCBT and the Food and Drugs Control Authority (FDCA) once a year, things will remain under control, he added.

Speaking about the price difference, Dr Gopal said: “While there is an upper limit per unit set as per national guidelines, most blood banks in the state have been charging within the upper limit. We do not have a process at present to control the variation, but we are expecting the National Blood Transfusion Bill, which is looking into this aspect, to come up by 2010 end.”

Make thalassaemia test compulsory

Courtesy by: bdnews24.com

Dhaka, May 7 (bdnews24.com)–Call to make thalassaemia screening compulsory in marriage registration came from a group on the eve of World Thalassaemia Day on Friday.

Bangladesh Society of Haematology aired a 17-point charter of demands at a discussion meeting at the National Press Club in Dhaka on Thursday

Thalassemia is genetically transmitted blood disorder that prevents production of haemoglobin, the blood protein that carries oxygen in the body.

According to the World Health Organisation, around 4 percent people are carriers of beta thalassaemia in Bangladesh., said Dr Salahuddin Shah, general secretary of the society. Each year around 6000 children are born with the disease, he said.

Thalassaemia causes iron deficiency in the body like anaemia which can be cured by taking medicine or iron-rich food but it cannot be cured by taking medicine.

Its treatments include regular blood transfusion and bone marrow transplantation, among others.

A person who has one thalassaemia gene is said to have the thalassaemia trait. He remains healthy but can pass the gene on to his children.

If both parents carry thalassaemia trait then the chance of having a child with thalassaemia, then the chance of having a child with thalassaemia trait is 50 percent.

If only one parent carry thalassaemia trait then the chance of having a child with thalassaemia trait is 25 percent and the chance of normal child is 50 percent.

The other demands are introducing haematology department in all government medical colleges, modernising blood banks, setting up DNA lab in at the BSMMU, setting up bone marrow transplantation centre, giving subsidy on medicines used for removing excess iron from the body and forming a thalassaemia federation.

Tourism minister GM Quader put emphasis on starting a social movement for having mandatory thalassaemia certificate in marriage registration.

Prof Md Jamilur Rahman, president of the society, and ABAM Yunus, professor of the haematology at BSMMU, were present also attended.

Thalassemia centre for children to open on Feb 4

Courtesy by: timesofindia

PUNE: The Indian Red Cross Society, Poona district branch, is all set to open a dedicated centre for children suffering from thalassemia in Rasta Peth on February 4. The centre will provide blood transfusion and storage facilities at subsidised rates, besides counselling patients and their parents.

“Parents of children suffering from thalassemia can get themselves registered at the centre and avail of the facilities,” said R V Kulkarni, honorary secretary of Pune branch, adding that the centre can carry out 12 blood transfusion procedures a day.

“The centre is well-equipped with advanced machinery and a team of doctors and technicians. It will be the first dedicated thalassemia centre in the city and will maintain data of all patients for availability of blood,” Kulkarni said.

“The availability of blood and its other components is vital for blood transfusion procedures in cases of thalassemia. Considering this, we will be introducing a separate cell for storing blood at the centre itself,” he said.

“A single blood transfusion procedure takes more than 4 hours. Taking this into account, we have audio-visual facilities at the centre, which will help lighten the atmosphere for patients. All facilities at the centre will be available at subsidised rates about 50 per cent lower than the rates offered in city for similar medical treatment. We will also offer free-of-cost treatment for the economically weak patients,” Kulkarni informed.

Medical director V Ramanan said, “The thalassemia centre will also counsel patients and their parents on all precautions that must be observed during and after treatment. There are about 500 registered thalassemic children in the city. A child with severe thalassemia typically starts to show symptoms when he/she is 6 months old and needs a blood transfusion procedure ranging from every 15 days to 6 weeks. Children under treatment require a lot of attention to avoid complications.”

Project for creating awareness about thalassemia

The society also plans to start a project for increasing awareness about thalassemia among citizens. Under the project various tests for detecting thalassemia will be conducted at schools and colleges. “We will the basic infrastructure and machinery for the project. We will request the state government and the PMC to allot funds towards this end,” Kulkarni said.