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 🙂
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.
As many of you know FAiTh group – [Fight Against Thalassemia] has been engaged in arranging blood camps, awareness camps and free screening.
Thalassemia.com.pk 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 tif2011.org), I want FAiTh to attend and represent Pakistan!
But for that I need your support, I can’t do anything alone, need your contribution! 🙂
For over four years, Fight Against Thalassemia (FAiTh) has been trying to convey a simple message across to the government: to pass and implement a Pre-Marital Mandatory Tests Bill in the country. This is a simple request for a simple bill and a simple solution to highly complex problems that our society faces today.
Even though right now there are no government-based Thalassemia treatment centers, this situation will improve soon as there will soon be as many as seven Thalassemia treatment centers run by the Government of Pakistan. The exact date of when these centers will be setup however, only two G’s know: God, and Government.
FAiTh has attempted to utilize a myriad of media: from print to web-based, from television to spreading awareness on its own through the help of media owners. While FAiTh was busy with awareness campaigns, the Khyber-Pakhtunkhwa assembly sent us a shocking, yet pleasant surprise: they passed the Pre-Marital Mandatory Tests Bill.
This was a cause for celebration! However, this overwhelming joy was quickly swept over by another question: When a conservative province like the Khyber-Pakhtunkhwa is progressive enough to pass the bill, why are the other provinces so reluctant?
The North West is a place where the men do not want anyone to see their female counter-parts. I salute them for passing the bill and giving other provinces what we call, “ghairat ka dose.”
And, just after a few short days, the Sindh Assembly gathered all of its courage, and passed the resolution as well! What a brilliant milestone!
This is all great! However, what the Punjab Assembly did comes as a big slap across the metaphorical faces of all the other Provincial Assemblies. I understand that I am going to be opposed with many objections after this post. Even as I wrote this, I came up with several queries myself, such as it will be an invasion of privacy or that more problems will be caused for girls and aged women who are still awaiting their match.
I am supporting this bill because of the medical check-up made necessary. This can surely help to put a full stop to the birth of 5,000 Thalassemic children every year. It is not the children, that shouldn’t be born. It is Thalassemia. I have mentioned in my earlier posts as well, that I am representing Thalassemia patients of Pakistan. I am their ambassador, and I speak for them when I assert that they will be happy with this new law.
Now, the National Assembly needs to get some ‘ghairat‘ and do their part: implement the law countrywide!
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!
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?
What FAiTh did on World Blood Donor Day:
Sent this beautiful card to our awesome donors around the Pakistan
Sent thank you text to our lovely donors registered in our donor system:
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
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!
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:
In the end Dr. Mushtaq Memon (Incharge Blood Management Dept, Fatimid Foundation) thanked everyone for their participation and attending 🙂