Thalassemia in India

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Offline Manal

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  • mother of thal intermedia child
Re: Thalassemia in India
« Reply #15 on: September 18, 2006, 04:19:16 PM »
Dear all

The situation in India is not different from what we have in Egypt. It is exactly the same.
The outcome of ignorance is what i am suffering now although i am well educated. In the mass media no one has ever mentioned any thing about thal. Actually many doctors don;t know what it is, they have just read it once in the medicine school. If i only knew i was carrier many things would have changed. I am thankful to God for whatever i have,but hope that we are more informed about the disease.  When my son was diagnosed two months ago, i wanted to do something so that no one will be in my shoe again. I started telling my friends and family members that they  have to do CBC for themselves. They should be aware of there bodies. 
In addition, I am going to contact a friend of mine who is a famous anchor here in Egypt and i am going to suggest discussing the topic of thal in her show which is seen on a free to air channnel.
What is funny is that we only have one doctor who knows everything about thal management (  she has done tremendous efforts in this field and i will post it later in another topic ) and works in many researches with professor Laucarelli, but what if any thing happened to her.  Believe me many are going to suffer including me. Of course we have two or three other doctors,but no one like her.
Anyway, i will call my friend as i told you and will keep you updated.

Manal

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Kathy11

Re: Thalassemia in India
« Reply #16 on: September 18, 2006, 11:50:16 PM »
Hello Manal,
It's not just your part of the world that there is ignorance in regards to this blood disorder .I live in Perth west australia and I struggle with my health every day and yet waiting, to get a good satisfying answer from a heamatologist, as it is now I've been told that they can't do anything for me.
My general practionioner will treat  me and prescribe medications for the arising conditions that I already suffer from. such as Diabetics,  Hypertention,  high colestrols, osteoarthritis in both knees and intermittent  pains in my bones and joints.When faced with stressfull situations I get so muddled and exausted that I feel I want to kill my self. still I feel that everyone one concern that can treat me think its a joke and this continue to fustrate.Yes today is one of my bad days :-\
I have practically given up on the doctors and trying my best to keep me sane and treat myself the best way I know how and that takes a lot of efforts  on my part.
P:S it has been ascertained that I have defected genes.  such is lfe I have to learn to accept the thing that i cannt change and make the most of what life I've got while i still have it.
thank-you for your time and good luck to all.

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Offline jzd24

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Re: Thalassemia in India
« Reply #17 on: September 19, 2006, 01:25:50 PM »
Kathy,
    Sorry to hear you are having a bad time. I know some days are better than others, and some  can be downright awful. I spent 4 hours in the emergency room on Sunday, and I have to have a CAT scan today. It's the constant dealing with chronic health problems, and working with medical people who don't know what to do that is so frustrating. As the thal population gets older, there are new medical issues that no one has dealt with before. Also, in some parts, doctors have no thal experience at all.  :rotfl
     You have so many medical issues, I can see where you get so down. I really feel for you and can see how you get to the point of wanting to just forget about it all. Please hang in there! There may be medical advancements which can help you in the future. You are a good person who has given encouragement to others in this group, and now I'm giving it back to you. It is so good to have a place where we can express our frustrations - it has meant a lot to me.
     Kathy, please take care and know I am thinking about you and wishing you well.  Jean

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Offline Maako

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Re: Thalassemia in India
« Reply #18 on: September 19, 2006, 06:12:48 PM »
Hi all,


In case of India (or maybe for that matter the other south-east asian countries, like Pakistan, Sri Lanka, Bangladesh, Maldives, etc) think of the vast multitude of population that live in the villages who get married off and their marriage is not even registered, so there is no question of a license to be issued and thus no need for a blood report.


Just to let you know that even in the remotest of islands in Maldives, marriage cannot be performed without the presence of majistrates and witnesses, hence every marriage in Maldives is registered and a marriage certificate is issued. In Maldives, testing before marriage has been made mendatory by the law, hence no couple in Maldives can marry unless they provide the cards (or reports) which indicate thier thalassaemia status, so even if two carriers marry, they are aware of thier status, given genetic counselling and told of the consequences they may have to face and of the options they have if such a consequence arises.

But i agree with what you have said, that is, if the marriages are not registered, making the blood test mandatory before marriage may not be so useful and the best way in such cases would be as you have said, putting it into the vaccination system so that every newborn baby is tested.

Maako

Maako

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Offline Manal

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  • mother of thal intermedia child
Re: Thalassemia in India
« Reply #19 on: September 19, 2006, 09:34:33 PM »
Dearest Kathy :heartred :heartred

Come on be strong. I know sometimes we feel that we cann't struggle any more, but this our role now to remind you that you can and you will always do. You kathy had given me a lot of support when i first started to post. Where are you words to me. Please remember as long as you are good from inside you can do any thing and endure every thing. Please take good care of yourself and try to go out with people you like, sit in cafes, go to cinemas, this will change your mood and remember that we are all there for you. feel free to talk to me at any time. Show me your smile now! :smile2 :smile2
Take good care
Manal

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Kathy11

Re: Thalassemia in India
« Reply #20 on: September 19, 2006, 10:14:20 PM »
Thanks Manal your kindness and encouragemnt is appreciated. Today i'm going to do my volunteer work,  that will cheer me up.there I meet with people from different part of the world and they are so eager to learn.I Always feel better after my two classes.
kathy.

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Kathy11

Re: Thalassemia in India
« Reply #21 on: September 19, 2006, 10:24:01 PM »
HI Jean.
Thank-you for your support ,I  hope your cat scan result is good.life goes on I need to be gratefull I have made it this far, sometimes I wonder why :dunno
Its another day in paradise I'm going to work and that is a blessing to me.that is because I'm still being of service to others.take care and good luck my friend :flowers

Re: Thalassemia in India
« Reply #22 on: March 22, 2010, 10:42:52 PM »
I think , if i am not mistaken , Mr. Amitabh Bacchan is a thal minor!!!
And once upon a time, Mr. Sunil Dutt was present at the Mumbai thal conf.

shikha

Yes, you are right. I saw it too somewhere but can't find it again. I also read somewhere that besides Amitabh, Pete Sampras (Tennis player) and Zinadin Zidan (French Soccer player) are also Thal minors.

 

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