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(Sallman's dream ) Thalassemia free Pakistan

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nice friend:
Keep Smiling,
Insha ALLAH !!

Umair

Waleed:
SALMAN HAD A VERY BROAD VISION ........

          May ALLAH bless him JANNAT UL FIRDOS (THE highest level in paradise) ....... he had a very broad vision that is clearly reflected through his professionalism and his steps he took ... The bill is there in NWFP thats true .but how many ppl in pakistan or families in pakistan would really practically adhere to it ???? .... let alone take ppl of lahore as an example ...... any family would consider it derogatory to have their daeughter / sister to b checked for thalsmia ...cuz of the menace of the society v live in ..........so wuts the solution ? Its the education and awareness ....its the eradication of all social evils and psuedo honour thoughts that will only make this possible ........... so all of us if only motivate ppl around our own social circles, and tell them how important it is, only then it will b possible ....
.
one suggestion would b that ... suppose ur from a thalassemic family ... u shud motivate a prospect groom to have thal test .... and if found postive , only then shud the girl's test b done .... cuz if boy is free from thal trait then theres no point to test the girl .... this wud b gr8ly helpful cuz thu this the family of the  bride will evade the test and dont face such stupid social comments that exist in our society //

Andy Battaglia:
The problem Waleed talks about is very real throughout Asia, and even today some remnants of this exist in the Mediterranean area. How do we get people to get tested without them worrying about being labeled with what has been called "the stigma"? I have heard this same thing from people in India. Some even object to our efforts to spread awareness because testing as a thal minor can limit one's marriage prospects.

Of course, we are not about to stop trying to spread awareness and educate the public, because rationally, this makes sense and avoiding it only leads to couples unexpectedly having thal major children. Testing will eliminate this. In places like Hong Kong and Cyprus, there has been tremendous success in eliminating the births of thal majors by testing before marriage. The evidence is there that testing works, but this success in smaller more controlled environments like these islands meets many challenges elsewhere. Even in the Maldives, where testing should have been able to greatly reduce the birth rate of majors, the results have been weak. There are cultural and even religious issues to deal with and I think in many societies, if it is to work, the clergy needs to be brought on board to the concept of testing for thal, and then work within the rules of their religions to help implement this policy. I do not believe we will make enough headway in creating awareness and acceptance of the idea, unless it can be done in accordance with the religions of the areas. The church helped with this in Cyprus, so it can be done. It has to be done because there has been a huge change in the world in the past 20 years in terms of availability of medical care, and babies that formerly would just die with no treatment are being transfused and surviving. The cost of treatment is more than most affected countries can absorb, so if we are going to do our moral duty and provide for those who need medical help, we are going to have to see a large decrease in the amount of thal majors being born every year worldwide. There is not enough money to treat all the thals in the world today, and there won't be tomorrow. In a new world that feels more obliged to fulfill its obligation to all people, thalassemia will create a monstrous financial burden. This will take an effort that coordinates government and religious leaders along with the leaders in the world of thalassemia. This is the effort in which TIF needs to be a leader and it should include all the local associations throughout the world. We are all doing our parts by spreading the word as much as we can here and elsewhere, and what Waleed suggests is a very effective "guerrilla" method that individuals and small groups can do that bring real returns and we all have to continue to work hard to help educate others and make people aware of the importance of testing. Even on the local level, people can talk to their clergy to find how the concept of testing can fit in with the tenets of various religions. All religions try to do what's best for the physical health along with spiritual health, so this should fit in everywhere once logic is applied.

Let's all continue our efforts.

Zaini:
Waleed has described our society correctly,i am a thal minor myself,which i never knew until my daughter was diagnosed,and a few years after my daughter was diagnosed,my sister was getting married and it was a tremendous effort to make my mother understand that its vital that she get tested,if she is in clear there is nothing to worry about,and if she has minor we can always test her partner after marriage,we don't have to tell "anyone anything",thats how i was able to convince "my mom" who has a grand daughter with thal major,to let my sister get tested,and Alhumdulillah my sister does not carry the trait so in the end it wasn't a problem.

I am happy that Waleed brought this up on time,as one of my cousins is about to be engaged,and i'll try and talk her mother,my aunt,into it,and hopefully i'll be able to convince her,as thal trait runs in my maternal side of family and she is the sister of my mother,so she could have carried thal trait her whole life and may be never knew about that.

Wish me luck coz i know what my mom would say "you'll just terrify them,and we can't let the girl's in laws know about that "  :rolleyes but i am gonna talk to my aunt anyway.

Zaini.

Lena:
It surely isn't enough to act on a personal basis, the outcome will be too poor. Andy is right about needing an organised effort, a programme from religions or states everywhere in order to mobilise individuals. The contribution of TIF in this would be greatly appreciated. That is what I have always been thinking of TIF, this is the role they should play. Their reason of existence, in my opinion, is to help less developed countries on thal itself and on prevention of thal.Let's hope they act on that. It's too important.


Zaini,

wish you every luck in the world - you really are precious!

Lena.

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