No test, no nikkah (Part 2)

Courtesy: tribune.com.pk

After my post “No test, no nikkah”, I have got some appreciation and at the same time some objections as well.

Here is the reply to those objections:

Several people asked me how they can ask their partners to get tested. “It doesn’t look good,” they said. A friend of mine said “The in-laws might start beating me Ayesha!” and I simply replied, “Just for once think of your generation – that beating won’t be anything then.”

Then, there are people who ask me who am I or the government to stop them marrying their love if both are Thalassemia minor.

Who said you can’t marry them?

No test, no nikkah doesn’t mean that you can’t marry your love if both of you are Thalassemia minor, it just means that for a precaution get yourself tested. If both are found minor then in every pregnancy you will have to get a test called “Prenatal diagnosis or prenatal screening”

What is prenatal test is for?

Just to make sure that your child does not have Thalassemia major (disease state), and God forbid, if the baby does have the disease then you can abort the baby within 120 days of the pregnancy.

Is it too difficult getting tested?

Then, for once imagine this: will you be able to bear your child pointing his/her finger at you and saying “Mom/Dad, you are responsible for my illness”? Will you be able to bear seeing your child getting pricked by needles, and all the other painful procedures that come with being a Thalasemmia patient? No…you won’t be…

It’s so difficult to get your partner tested?

Okay, don’t ask them for it, go and get YOURSELF tested, and if God forbid you get some irregular result then you can ask your partner to get tested. If the result is normal then it doesn’t matter whether or not your partner carries Thalassemia Minor gene, because it won’t do any harm. In that case just a kid or two will carry a minor gene, that’s it.

Is it still difficult?

You might think I must have pointed fingers at my parents too. Or maybe I feel bad for having Thalassemia and that is why I am writing such posts? Let me assure you that is not the case. I have seen two-year-old children at the transfusion center – even kids younger than 2.

I have seen how they get pricked, how they cry, how the nurses get their veins. If you see it yourself, you will cry… I bet you will.

And since I have been seeing this for so long, I really want to save our next generation. Wont you step ahead and help me? I don’t want another child to get pricked with needles because of lack of awareness, please?

Just one blood test can save your generation, what else do you want now? If you still can’t get it … then it’s simply useless to tell you anything…

And sorry people, but your objections are overruled and now you are left with no choice but to get yourself tested.

FAiTh’s dream : Thalassemia free Pakistan!

No test, no nikkah!

Courtesy: tribune.com.pk

Almost every third girl gets married to a guy she doesn’t know, has never met or never talked to before. The guy’s family just saw the girl somewhere, they sent the proposal and if the girl’s family didn’t find anything objectionable then everything is final – the date is fixed, venue decided…and they get married to each other.

Now, the happily married couple is expecting a new family member, and when the new family member is born, they get to know that the baby is having a disease called Thalassemia. They go blank. They run to doctors. They try to do what ever they can do. In the end, they get to know that both of them were Thalassemia Minor which is why their baby is Thalassemia Major.

Minor + Minor = ?
25% chances are of Thalassemia Major
50% chances are of Thalassemia Minor
25% chances are of Normal

Sadness takes the place of happiness soon…. And the baby becomes used to hospital visits, transfusions, needles and medicines.

Now the question is: Where did it all begin? What was the mistake they made?

Till a few years ago, people used to ask parents of Thalassemia major that if they were cousins? Did they get married within the family? Yes, Thalassemia genes do get inherited, but it is not only in cousin or interfamily marriages, it can even happen when a guy and girl do not know each other and get married and when they never get tested…

Asking the couple to get the test done before marriage is like asking one to commit the biggest SIN!

But why can’t you think, just for once, for your next generation? Why don’t you see the bigger picture?

When are we going to stop being so narrow-minded?

A few months ago there was a comment on my blog which said:

“No Test, No Nikkah!”

I feel the government should pass a bill about this issue soon. There are many countries that have already started this, why can’t we? And when will we?

We all know our government so why don’t we start something on our own too?

What you can do as an individual?
* You can get yourself and your partner tested before marriage
* Ask your friends to do the same
* If someone you knowis getting married ask them if they have gone for the test
* Spread awareness about this to family, friends, colleagues, neighbours and everywhere…TO SAVE THE NEXT GENERATION!

The test is called HB electrophoresis and it is not very expensive…

So, when are you going to get yourself tested?

Stem cells infuse new life into 7-yr-old

Courtesy: timesofindia.indiatimes.com

AHMEDABAD: It was double whammy for little Urvish Bhavsar. Born with thalassemia major, a serious blood disorder which requires regular blood transfusion, he was later diagnosed with blood cancer also. And now he is cured of both!

Urvish, 7, recently underwent stem cell transplant where peripheral stem cells from his sister’s blood were collected and transplanted in him.

The procedure has turned out to be successful as his blood cells now show XX chromosomes which basically mean that the new blood in his body is from a girl — in his case, his two-and-half-year-old sister Richa!

“This is one of the rarest cases where a child has been successfully treated for two major illnesses. Urvish’s blood samples show that the transplant has worked. He will be cured of both thalassemia and cancer,” said Dr Sandeep Shah, head of the Bone Marrow Transplant (BMT) department at Gujarat Cancer Research Institute (GCRI). It has been 28 days since the transplant and he is recuperating at GCRI. His mother Sunanda can’t believe that her seven-year-long struggle has ended.

“Urvish was diagnosed with thalassemia major when he was three months old. We had a tough time going through his blood transfusions. When he joined kindergarten he was diagnosed with blood cancer. We were shattered but decided to go ahead with the treatment as we had to do everything possible to save his life,” says Sunanda. Urvish’s father Umang runs an optical accessories store in Naroda. The Bhavsars had discussed stem cell transplant as a treatment for thalassemia but had to wait as the elder daughter was not a match. Meanwhile Urvish was put through chemotherapy.

Once that was over, it was decided that stem cell transplant would be the best treatment for both illnesses. Moreover, his younger sister Richa was found to match as a donor and the transplant was done successfully. “Despite being in and out of hospitals ever since he was born, he scored 95 per cent marks in class I. He loves going to school,” said an elated Sunanda. Dr Kirti Patel, acting director of GCRI, said that so far 112 BMTs have been done in GCRI of which six were also cord blood transplants. “Cases like Urvish’s are rare and give us the impetus to surge ahead,” said Dr Patel.

Most Hyderabad blood banks not safe

Courtesy: timesofindia.indiatimes.com

HYDERABAD: The next time somebody from your family requires blood transfusion, cross your heart. The chances are that the blood procured from a blood bank will not be free of viruses that can cause deadly infections. “It’s a bloody mess at the state’s blood banks and only a few well-known names are free of problems,” said a source familiar with the state of affairs. “Many unsuspecting patients contract deadly disease like HIV and Hepatitis B and C because of blood transfusions,” he added.

The worst hit are those who need blood routinely, such as children suffering from thalassemia. In the last four years as many as eight thalassemic children contracted HIV and Hepatitis C & B infections during the course of blood transfusion. Rajesh Popli, secretary, Society for Thalassemics, says that at least five thalassemic children tested positive for HIV in the last two years alone. “As per our information, these children are from Hyderabad, Visakhapatnam, Nizamabad, Medak and Krishna,” said Popli.

That the stock of blood in many banks is suspect is corroborated by the government itself. The Drug Control Administration’s recent state-wide survey of 219 blood banks found that just about a handful of them met the quality standards. The lapses included non-functioning air conditioners and the use of “rapid testing techniques” by most banks (to reduce the cost of screening) which could miss detecting these fatal infections.

“We found that around five blood banks of the total 219 were following the quality standards,” said a DCA top official, adding that notices were being issued to the erring banks to beef up their standards. And that’s all in the form of punishment for these banks!

As per norms, blood should be screened for communicable diseases including HIV I & II, Hepatitis C & B, malarial parasite and Venereal Disease Research Laboratory (VDRL) test. “The problems are cropping up because of the absence of technically qualified persons. Pathologists are mandatory but many are unwilling to work in blood banks. Besides, blood screening costs are high,” said Dr V Saraswati, who is with NTR Blood Bank, which doctors say complies with most standards (along with Chiranjeevi Blood Bank). Some blood banks, as per the DCA survey, were even found lacking equipment.

While pathologists are meant to declare blood ‘safe’ for use, they prefer working with hospitals over blood banks. The banks are also wary of hiring them because of the high salaries they demand. Focused on cutting cost of screening processes, blood banks flourish thanks to an indifferent government. Worse, the government shies away from introducing tests that could help such as the PCR test which can detect infections even during the window period (the period from the time of contracting infection to testing positive for it). “The PCR test charges range between Rs 2,000 to 3,000 per test and it is not feasible to do this test on lakhs of units,” said an official from AP State Aids Control Society.

Stories from the Heart: An Interview with Lauryn’s Mom

Courtesy: unitedbloodservices.org

Have you ever wondered about the extra challenges faced by the families of chronically ill children?  Three-year-old Lauryn was diagnosed with beta thallassemia, a genetic blood disorder that disrupts the production of hemoglobin and often leads to severe anemia.  We asked Lauryn’s mom, Christine, a few questions about how blood donors make a difference to her family.

UBS: Lauryn has beta thalassemia.  How do you describe her condition to others?

Christine: Thalassemia is a rare genetic blood disorder that mainly affects people of Mediterranean and Asian descent. There is no cure at the present time. People with Beta Thalassemia do not have the hemoglobin gene. Thalassemics’ blood cannot supply oxygen throughout their bodies to vital organs or tissues.  Both parents must carry the thalassemia trait in order to pass it to the child. The odds are 1:4 each pregnancy. My three-year-old daughter, Lauryn, is “surviving” solely on the blood that people donate.

UBS: How does this disease impact your lives every day?

Christine: Our lives are mostly spent at Phoenix Children’s Hospital. Lauryn gets blood transfusions every 3-4 weeks. She receives 250 cc’s each time. When Lauryn gets ill, even a slight fever, we have to rush her to the doctor to determine if she needs “extra blood” or additional treatment. Common childhood illnesses are more severe for thalassemics. Their immune systems are very compromised, so we need to be cautious. Lauryn is on an extremely expensive medication called Exjade. When people get blood transfusions, the iron from the donors blood accumulates in the body and is mainly deposited in the heart and liver. It’s called iron-overload. Besides not being transfused, iron-overload is the number one killer of people like Lauryn.

The medication, Exjade, is used to remove the iron deposits (also known as ferritin) from the body. It’s not 100% effective, but it definitely does its job! When you look at my baby, you would never expect that she had anything “wrong” with her. She is a happy, energetic, normal three-year-old. Even though she is only three, she’s taught my family so much – faith, courage and definitely hope!

UBS: Why are blood donors important to your family?

Christine: To put it into words….wow. Well, blood donors are the reason why my child is healthy and alive today. Fifty years ago, blood donors were scarce, and thalassemics only lived through their teens. Today, because of awareness and more information, thalassemics can live well into their forties!!! The fact is that blood donors are selfless, compassionate and willing to help others. They have no idea the impact they make every time they donate blood. I pray every night, before bed, thanking God for donors. l know in my heart that Lauryn will live a fulfilling, healthy, and successful life because of the gift that everyday angels give.

My life and family are complete because of blood donors. There is nothing in this world that I could ever do to thank them enough! They don’t realize it, but I hope they will, that they save people like my baby every day, and every time they donate, they truly do give “the gift of life!!”

World Blood Donor Day: Thanking those who save lives

Courtesy: tribune.com.pk

“Every second, someone in the world needs blood.

And every step of the way, you have been there to fulfill that need.

Your generosity has been the hope and courage for thousands of those patients who suffer from Thalassemia. Thanks to your support, those with Thalassemia now continue to lead complete and full lives. All barriers have been brought down, and continue to be brought down, and many Thalassemic patients go on to do extraordinary things!

It is no doubt that blood is the vital need of all human beings. And this is most true for thalassemic patients.

Thank you for saving the lives of countless people. Thank you for being their hope. Thank you for being an abundant fountain of courage and support.”

The above was a thank you card, sent to our regular blood donors to mark World Blood Donor Day. A little background:

World Blood Donor Day builds on the success of World Health Day 2000 which was devoted to the theme “Blood Saves Lives. Safe Blood Starts With Me”. The enthusiasm and energy with which this day was celebrated indicated that there would be a positive response to an opportunity to give thanks to the millions of people who give the precious gift of life. It also builds on International Blood Donor Day organised annually by the International Federation of Blood Donor Organisations since 1995. – Courtesy: http://www.wbdd.org

Since 2005, June 14 is celebrated as World Blood Donor Day all over the world to thank millions of blood donors who have taken out time and donated blood for the needy. Being a Thalassemia patient, I know how important blood is for us. Getting blood after every 15 days is only possible because of the massive blood donors.

Blood is needed by many people around the world every second. This can be a mother giving birth, an accident victim, a boy with dengue fever or a father facing open heart surgery. And saving their lives wouldn’t be possible without blood donors. This saying certainly stands true: “You don’t have to be batman to save lives!”

On behalf of the Thalessemia community, I would like to thank the people who have saved lives and plan to save them in the future. It is because of you we thalassemics have a healthy life!

Your blood saved my life, thank you!

Blood donation camps in memory of Benazir

Courtesy: thenews.com.pk

Blood donation camps will be arranged in all districts of Sindh for three days starting on June 21 on occasion of Benazir Bhutto’s 57th birth anniversary.

This was stated on Sunday by Dr Kareem Khawaja, president of People’s Doctors Forum, while talking to The News.

A portion of the total collection of blood would be dispatched for soldiers fighting against terrorism while the other beneficiaries of this campaign would be the patients of thalassemia and the general public, he said.

Dr Khawaja said that his forum had collected 10,500 blood bags last year out of which 5,400 bags were given to the soldiers involved in eliminating extremism and terrorism from Khyber Pakhtunkhwa and tribal areas.

Meanwhile, a handout issued from the CM House said that executive district officers (health) would arrange blood camps for three days in their respective districts. Sindh Chief Minister Syed Qaim Ali Shah has announced a reward for maximum collection of blood bags in the districts.

Cord blood service formally launched

Courtesy: gulf-times.com
Hamad Medical Corporation’s Women’s Hospital, which catered to as many as 15,553 births last year, has become the first public hospital in the region to offer a private cord blood banking programme involving extensive patient education.

The formal launch of the cord blood banking services, implemented in partnership with Virgin Health Bank-QSTP, was held yesterday at an event at HMC’s Hajar Auditorium.
Women’s Hospital executive director Nish Patel, VHB-QSTP CEO Dr Rajan Jethwa, Women’s Hospital’s obstetrics and gynaecology consultant Dr Arabo and other dignitaries were present.

“We are offering our patients and their families a whole new frontier of medical therapy through the cord blood banking services,” Patel stated on the occasion.

“Our goal is to reach families, especially mothers, and raise their awareness and enable them to make an informed decision,” he explained.

The official recalled that HMC and VHB QSTP had signed a Memorandum of Understanding in December 2009 to offer the service and initiated a comprehensive training programme in January this year for Women’s Hospital staff.

The programme is intended to provide families with the opportunity to purchase high quality cord blood stem cell storage should they wish to do so.

Dr Jethwa pointed out that umbilical cord blood stem cell transplants are today used to treat over 80 diseases, principally for conditions like leukaemias and blood disorders like beta thalassemia major and sickle cell anaemia.

It is also anticipated that in the future stem cells will form the basis of developments in regenerative medicine.
Families, who choose to have their babies delivered at the Women’s Hospital, can contract with VHB QSTP to bank their newborn’s cord blood for an initial period of 20 years, by paying a one-off charge of QR12,950.

“Our multilingual counselling team is available by telephone, e-mail or at Women’s Hospital, which is responsible for about 95% of births in Qatar, and specially trained personnel will collect the cord blood using best practice techniques,” Dr Jethwa said.

Information on the service is also available at Primary Health Centres, where expectant mothers go for antenatal care until the 32nd week of pregnancy, before being referred to the Women’s Hospital.

“The process of cord blood collection does not interfere with our clinical work,” Dr Arabo explained while observing that there is an increased demand the world over to store cord blood stem cells.

It was also clarified that in the process of cord blood banking, only adult stem cells are harvested so there are no ethical considerations and the process has been confirmed as being Shariah compliant.
In a message, HMC managing director Dr Hanan al-Kuwari maintained that HMC is always striving to deliver the highest quality standards of healthcare and the partnership with VHB-QSTP is an integral part of that endeavour. Until VHB-QSTP’s cord blood stem cell processing and cryogenic storage facility is ready by the end of this year, all cord blood units collected from Qatar will be taken to VHB’s facility in London.

FAiTh & World Blood Donor Day!

What FAiTh did on World Blood Donor Day:

Sent this beautiful card to our awesome donors around the Pakistan

World Blood Donor Day

Sent thank you text to our lovely donors registered in our donor system:

Ref: Thalassemia.Com.PK
World Blood Donor Day
It is no doubt that blood is the vital need of all human beings. And this is most true for thalassemic patients.
From all the thalassemia community – Thank you for the blood that you donated 🙂 Thank you for the gift of life!

Wrote an article @ The Express Tribune
You can read it here: World Blood Donor Day: Thanking those who saves lives



Got ANOTHER shield for arranging blood camps for Fatimid Foundation Karachi

This couldn't have been possible without you Thank you donors!, FAiTh once again got a token of appreciation from Fatimid

Nothing could have been possible if YOU were not with us. Thank you so much for love, support, care & the gift of life – Blood. Thank you!

Fatimid & World Blood Donor Day!

Just like every year, Fatimid Foundation Karachi celebrated World Blood Donor Day today at Beach Luxury.

Fatimid has been celebrating Thalassemia Day, Hemophilia Day and World Blood Donor Day since few years. Celebration started at 8 pm with Tilawat-e-Quran, followed by Naat by a Hemophilia patient.

Welcome address was given by Dr. Waleed Bin Azhar (CEO – Fatimid Foundation), quiet an un-professional welcome address though, next was a speech by Thalassemia patient – Hina Zaheer, very well delivered.

Next on dice was Dr. Zahid Hasan Ansar (Provincial Programme Manager/Secretary Sindh Blood Transfusion Authority, Govt. of Sindh), though whatever he told is what we have been hearing from government, 7 new thalassemia centers going to be opened, but when.. that only God knows 🙂

After Dr. Zahid, Dr. Aieysha Humaira Khan (Hematologist, Fatimid Foundation) gave an over view on Blood Bank, how it works, how blood/platelets are being stored etc. She used power point presentation to give over view, quiet a bad impression – at least thats what I got.

After Dr. Aieysha, Lt. Gen. (R) Moinuddin Haider (Chairman, Fatimid Foundation) were called up on dice, He mentioned about the ad published in today’s news paper by Dr. Zahid on World Blood Donor Day, importance of donation and benefits of it.

According to Gen. Moinuddin, Fatimid collected 56,000 bags of blood in 2009 BUT gave 96,000 in return to the Thalassemia patients and outsiders, he mentioned the day to day progress of Fatimid, today Fatimid has ISO certificate and the same lab machines like Aga Khan have.

He even appealed to the government to work on Thalassemia centers and on prevention bill, I hope they listen to him.

After Gen. Moinuddin, Mr. Yasin Malik was called up on dice for a speech, quiet a good opening he did, mentioned a lot of good work done by Gen. Moinuddin and other fellows, mentioned some of the future plans. May Allah help you sir!

After the speech, shields, token of appreciation was given to the people who regular donate blood or arrange blood camps for Fatimid.

FAiTh was among the people who arrange blood camps and got a sheild:

This couldn't have been possible without you 🙂 Thank you donors!, FAiTh once again got a token of appreciation from Fatimid

In the end Dr. Mushtaq Memon (Incharge Blood Management Dept, Fatimid Foundation) thanked everyone for their participation and attending 🙂