The Verdict
Is a Thalassemia test too much to ask?

Is a Thalassemia test too much to ask?

A simple blood test can save our next generation, but instead I receive calls by married couples whose lives have been devastated by news of their child having thalassemia.

Ayesha Mehmood October 05, 2010

As I typed the list of thalassemia centers all over Pakistan, my cellphone started ringing and diverted my attention. On inquiring who was calling, I heard a sad and depressed voice on the other end. A father’s voice.

I usually get calls but there was something special about this particular one. The guy got married around two years ago to the love of his life (who was his cousin). Now they have a one-year-old baby... and that baby is a thalassemia major.

According to him, no one in their family had this disease, but both of them were thalassemia minor and they didn’t know about it before.

He asked me "Why did it happen to us?"

I couldn’t stop myself from asking him “In this advanced age, why didn’t you know about a simple blood test?”

Because of my previously written articles people think I am against cousin marriages, though I am not. I just wish for people to go through a simple blood test. If every existing thing has a reason behind it, then the thalassemia test has a reason too!

After talking to the father for more than 30 minutes and telling him what he should do now, what are the options etc, I ended the call with the realisation that there is still a huge section of our population that lacks awareness regarding this issue. I believe the media has a strong influence on people and they should come forward and take part in raising this awareness. I bet if a TV ad ran on every single news channel for just a short period of time, it would save several lives.

Once again I will state I am not against cousin marriages, but if you are going to get married please get yourself tested!

A simple blood test can save your next generation… is it too much to ask?

WRITTEN BY:
Ayesha Mehmood Ayesha is official spokesperson of FAiTh (Fight Against Thalassemia), actively blogs at Ayesha's blog and tweets @blessedAyesha

The views expressed by the writer and the reader comments do not necassarily reflect the views and policies of the Express Tribune.

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COMMENTS (31)

Ayesha abid | 13 years ago | Reply sallam to every body. i have recently updated page on facbook. "share Thalassemia Education & prevention in Pakistan" Stepp Pakistan is a account. those who want to have healthy information about Thalassemia, can view my page. As we know that Thalassemia is our national health concern, i would like to request our youth to participate in awareness process so that we can see our beloved country as Thalassemia free. Regards, Ayesha Abid Islamabad Pakistan

Ayesha | 13 years ago | Reply @Ayesha Abid : MashaAllah, Congratulation :) prayers and wishes on your way.. let me know if you ever need any help :)

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Ayesha abid | 13 years ago | Reply Dear Ayesha I have organized my own project STEPP. Share "Thalassemia Education and Prevention in Pakistan". My office is in Blue Area Islamabad. InshaAllah i will try my level best to creat awareness among my nation accross Pakistan through different means of Communication as I have also done Masters in Mass Communication. InshaAllah after registration i will send you my address and phone numbers. Thank you so much for being so cooperative. God bless you n take care. "LOG ISS KO AAGAHI SAMJHEIN GAY YAAN DEEWANAPAN MUSTANID JO BAAT HAI, WO MUSTARID KARTAY HO KIOWN"??? Regards, Ayesha Abid Islamabad.

Ayesha abid | 13 years ago | Reply Thank you so much Ayesha! Now i will try my level best to do something better for my nation. wishing you all best for this noble cause. God bless you! Take care! Regards, Ayesha

Ayesha | 13 years ago | Reply Ayesha, sorry for late reply.., am sorry but there isn't any Thalassemia center exactly in Islamabad, you can find few in Rawalpindi, am stating the ones I know in Rawalpindi. Pakistan Thalassaemia Welfare Society, Rawalpindi Address: Thalassaemia House, Tipu Road opp. Rawalpindi Medical college Telephone/ Mobile: 051-5951269, 5780749 Jamila Sultana Foundation, Rawalpindi Address: 24,D . 6th Road Rawalpindi Telephone/ Mobile: 051-4842184 I hope it helps you :) Take Cares, Allah Hafiz

Ayesha abid | 13 years ago | Reply @Ayesha abid: dear Ayesha can i know where are Thalassemia centers in Islamabad?

Ayesha abid | 14 years ago | Reply Thank you so much Ayesha 4 replying me. Can i know where are these Thalassemia centers in Islamabad? May God give us courage to help those who are suffering from it n May we help our nation to eradicate Thalassemia permanently. Amin. Take care. God Bless you! Ayesha Abid

Ayesha | 14 years ago | Reply Ayesha Abid: you can contact Thalassemia centers in Islamabad and be a volunteer there, then with their help you can organize seminar, free testing, awareness camps, blood camps, everything! :) If you need any help don't hesitate in contacting me!

Ayesha abid | 14 years ago | Reply It is a good piece of information! I am also doing the same thing to create awareness among masses about Thalassemia. Unfortunately our nation is unaware of future threats. Thalassemia awareness has become moto of my life and i will continue my work as a volunteer. I belongs to Islamabad and you know there is lack of awareness about Thalassemia. Karachi is doing good. so i want to organize seminars and other awareness activities in my city to save from Thalassemia. i pray to God plz give me a chance to do some good for humanity. "Get tested, before it tests you because health is not valued till sickness comes. Unfortunately a large number of our population even dont know about this serious blood disorder until or unless they become victime of it. Thalassemia is devastating not only for the patients but also for the entire family and eventually for the country as well. instead of saying " what cannot be cured must be endured" we can say " prevention is better than cure". Its better to take care that a problem does not happen than to have solve the problem afterwards. we should go for premarital blood screening and avoid cousin marriages to eradicate Thalassemia from our country. Prove your self that you are sensible and mature educated people. Please dont refuse someone because he is a carrier of Thalassemia. plz dont make it hurdle in marriages because it is not you and me to decide every thing. God has written our script and we only act in this world. It is in our control to avoid Thalassemia major cases just if we go for premarital n pre-natal blood screenings. Thanks! Ayesha Islamabad

Maleeha Shah | 14 years ago | Reply When i first saw this article, it occurred to me that people who have access to this already 'know' and are 'aware'; but then, i hurriedly negated myself, because i remembered: This guy friend of mine who has lately been acting like a 'rishtay karanay waali maasi' =P (for his elder brother) completely disappointed me by not having the 'blood group compatability check and thalassemia test' on his mind while looking for potential sisters-in-law! There was this time when i talked of the importance of such tests in my hostel...girls literally went all laughing...at my concepts! and told me that it was just an 'inappropriate' thing to bring up during a rishta negotiation! duhhhh! This doctor, a colleague of my mother's, discovered after the birth of her three kids that she was a thalassemia minor! If a doctor can be so negligent, what are we to expect from others? So yes, i take back my initial thought and you have done many a good turn by bringing this issue to the fore!

Angelos | 14 years ago | Reply great article! "I believe the media has a strong influence on people and they should come forward and take part in raising this awareness. I bet if a TV ad ran on every single news channel for just a short period of time, it would save several lives."

Ayesha | 14 years ago | Reply @Sync: I can't tell you like this, its better that you go through a simple blood test and make it clear.. test name : HB Electrophoresis

Taha Kehar | 14 years ago | Reply I agree that a lack of awareness has resulted in this apathetic attitude. But how useful can adverts be in this regard?

Sync. | 14 years ago | Reply My parents are first cousins. My paternal grandparents were first cousins as well, but my maternal grandparents were not cousins. What the chances that I might have Thalassemia?

Shumaila | 14 years ago | Reply @ Aaminah - I think I can answer your question. STDs, even the big ones like HIV/AIDS, are curable. A disease like thalassemia major is not only crippling for a child who was not to blame for your ill-informed decisions, but is also difficult to treat, requiring lifelong blood tranfusions and aggressive iron chelation therapies. Thats not to say that testing for STDs before marriage isn't a good idea too. Just maybe not as important in our general setting.

Ayesha | 14 years ago | Reply @Khalil its better to get yourself tested. precaution is better than cure :) @Aaminah I really don't know about other genetic disorders much. but in first cousin marriages there is always a high risk of genetic disorders prevailing in your next generation, I am suffering from Thalassemia myself that is why I want to aware the mass about it, single myself can't take all the burden :) @Everyone thank you for appreciation!

Aaminah | 14 years ago | Reply I count as part of the masses who aren't aware of this completely, so I have one question. Why is it that people always talk about thalassemia? There are other diseases too right, like STDs? So why does everyone focus only on getting tested for thalassemia before marriage? Please explain.

S. Ali Raza | 14 years ago | Reply Fact - I am married to my first cousin and have 4 perfect and extremely intelligent children Alhamdolillah. So its not all that bad :)

Tee | 14 years ago | Reply I am against cousin marriages. So what? It is a known fact that it leads to a higher incidence of genetic diseases. Everyone is entitled to talk about what they believe in. It's good to see you on Tribune. Keep writing.

Khalil | 14 years ago | Reply I am engaged to a girl whos father and my mother are cousins. Is there any chances of this disease for us too? Please answer me. I will wait. Thanks for telling us about it

Fazeel | 14 years ago | Reply Really good blog,atleast someone is using this space for spreading awareness. God Bless you for writing this blog. Eventhough people are against cousin marriage but still do Thalassemia's test to them and their futur significat other.

SadafFayyaz | 14 years ago | Reply Even if some people are against you, dont hesitate to write....We had lots of cousin marriages in our parents era...(they and their cousins)...almost 6-7 cousin marriages took place and each child (1-2) chirdren from each family has serious disorders....3 cousins died at 24, 26///in 2004 and 2006...:( The rest have speaking disorders, learning problems. extremely low iq, deshaped heads. and fore head....For ex a couple having six kids.. 3 sons 3 daughters.daughters are above...5.10 and sons are hardly 5 ft....lot of other genetic disablities.....so if you are against cousin marriage.....doesnt matter...so WE are totally against cousin marriage now.......thanks for writing on this issue.......Please keep writing....

Shariq Qureshi | 14 years ago | Reply Nops, just a blog.

Muhammad Ziad | 14 years ago | Reply Err is this an article???

Talha | 14 years ago | Reply I skipped the article. Just replying to the heading. Answer: Nopse :D

ali | 14 years ago | Reply Well there is nothing wrong in opposing cousin marraiges, it leads to many other genetic diseases. My parents are cousins and i suffer from an undiagnosed metabolic syndrome.

Sultan Ahmad | 14 years ago | Reply Very Nice Article. Homoeopathy Deals With Thalassemia Very Effectively..

Chairman of the Bored | 14 years ago | Reply You're being very diplomatic about the cousin marriages. The fact is, numerous genetic diseases have a higher incidence in Pakistan than they should because people choose to have family stumps instead of family trees.

S. Ali Raza | 14 years ago | Reply Bless you and your efforts :)

Rana Usman | 14 years ago | Reply Thought provoking. People must go for this thing. In act thank you for illuminating awareness in me.

Sarah B. Haider | 14 years ago | Reply Glad that you came up with this write-up. It is media's duty to create awareness about health issues. But it would take some time for this information to be digested by the masses as our society is full of die-hard fans of cousin marriages and when issues are raised which somehow contradict to the prevalent norms and values of the society, it always comes with a lot of resistance toward change. I have a friend (a pharmacist) belonging to a very educated Sindhi family, was forced to marry her cousin brother (suffering from Achondroplasia dwarfism), despite her fear that there was always a 50 percent chance for the disorder to be transferred to generation next, her pleas were unheard and she was married off. Their child was born with Achondroplasia dwarfism as well. P.S. As far as my personal opinion is concerned, I am strictly against cousin marriages, and I had been against it even before I knew anything about Thalassemia. Thinking of marrying a man I have been seeing since childhood and someone you call a 'bhai' just gives me the nightmares. simply pathetic.

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