Australian Thalassaemia Association

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Offline Andy Battaglia

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Re: Australian Thalassaemia Association
« Reply #15 on: February 20, 2010, 08:57:16 PM »
Dr Robin and his group recently received a visit from George from TIF. I really hope this can start them on the road to getting more help for patients in Bangladesh. Bappy, I hope you can soon meet with them and talk to them about finding safe blood.
Andy

All we are saying is give thals a chance.

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Offline Bappy

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Re: Australian Thalassaemia Association
« Reply #16 on: March 01, 2010, 07:01:18 AM »
Hi there
I am bappy again.I visits "ASSA THALASAMIA" last Friday.I am able to talk with Doctor Robin and we discourse many thing's.He give me some blood test and i already give them my blood sample.I am waiting for result.I talked with Doctor Robin he say "He can do as much as he can only about free counsel not other things and he note my name if  he find any sweetable sponsor for me, then he inform me.I hope that he get it soon,Because i don't like Bangladesh,it give me nothing.

Thanks for your support
Bappy 
I am a thalassamia E-beta patient and I am a M.B.S student

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Offline Bappy

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Re: Australian Thalassaemia Association
« Reply #17 on: March 02, 2010, 05:25:46 PM »
Hi there
I am very happy  becouse last day i have recived some madicine (iron tablets) from assa thalasamia.
Its may run half of month.Refat apu(sister) give me that.

Thanks a lot, At list something i got from them.

Thanks
Bappy 
I am a thalassamia E-beta patient and I am a M.B.S student

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Offline Bappy

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Re: Australian Thalassaemia Association
« Reply #18 on: March 03, 2010, 04:29:39 AM »
Is my massage able to reach you Mr andy ?

Pleace do not angry with me,Some time i become upset.when i feel very alone.

Thanks for your support.
Bappy


I am a thalassamia E-beta patient and I am a M.B.S student

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Offline Andy Battaglia

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Re: Australian Thalassaemia Association
« Reply #19 on: March 03, 2010, 04:41:45 AM »
Bappy,

Did you send me a message recently? I haven't seen anything. Don't worry. I am trying to help you, as you see with Dr Robin. He is a very nice guy and will help you as much as he can.
Andy

All we are saying is give thals a chance.

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Offline Bappy

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Re: Australian Thalassaemia Association
« Reply #20 on: April 01, 2010, 06:46:13 PM »
Hello Andy
This is bappy again. I massage you because I want to share something with you. I have just finish exjde which is given by refath laila from assa thalasamia foundation. She gives me 28 tablets for 14 days use. I am late to massage you because I looking for blood transfusion. This month I have take transfusion after 35 days. I want to know, is exjde have any side effect? Because I feel sore in my upper lips, not so serious. I am already recovered. Now I am ok. I finish exjde but I think 14 days tablets are not enough for make proper effect. Can you give me some tablets please? If you can that is very help full for me.

I take my blood test on last 29-2-2010. I give that result.

Ferritin: 3250

creatinine: 55.6

SGPT:    63

Neutropill%:  58.00

Monocyte%:  2.00

Osinopil%:    2.00

Ed blood cell: 3.59 m/l

HB%;  7.02 g/dl

Am I need to take my blood test again? Please suggest me. I am waiting for your replay.

Thanks for your support
    Bappy
I am a thalassamia E-beta patient and I am a M.B.S student

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Offline Andy Battaglia

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Re: Australian Thalassaemia Association
« Reply #21 on: April 02, 2010, 02:02:01 AM »
Hi Bappy,

You need to have your blood tested when you are using Exjade, so until you can get more, there is no need for this test. The serum creatinine level is just slightly low and I would suggest that you make sure you take plenty of fluids when using Exjade. Drink a lot of water.

I don't have any chelators or supplies. It's been awhile since I received any donations of anything. I would like to ask people to donate whenever they have any extra chelators or thumbtack style needles. This will always be put to good use. And if there is anyone who can help Bappy and the treatment center in Bangaldesh, please do so. I am sure all donations, including money, would be put to good use. Doctor Robin could easily move to Canada with his family and make a good living, but he has chosen to stay in his homeland to help thals have a better life. Who can help? Please contact them and offer what you can. Let's see Bappy become another success story.

http://www.thals.org/en/About-Foundation/ASHA-Thalassemia-Center.html

Contact:  Riffat Laila
                 Administrative Coordinator

Address:  44/2 Chamelibagh, Shantinagar
                 Dhaka 1217
                 Bangladesh

                 Phone: +880 2 8332481
                             +880 119 084 0191

                 Email: info@thals.org



http://www.thals.org/en
Andy

All we are saying is give thals a chance.

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Offline Bappy

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Re: Australian Thalassaemia Association
« Reply #22 on: June 13, 2010, 05:35:44 PM »
Hello sir Andy,
                    This is bappy again.Today i mailed you because i need your help.India stop sending  desirox,this cause Dr.rodin give me some exjede for one month which is very useful for me and i want to  thanks him.My family is not very good financial  position for buying desirox and Dr.refath {apu} said,"next month you have to buy desirox".Which is not possible for me.I need your help.

please help me.   


Thanks
Bappy
I am a thalassamia E-beta patient and I am a M.B.S student

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Offline Andy Battaglia

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Re: Australian Thalassaemia Association
« Reply #23 on: June 13, 2010, 05:43:59 PM »
Is there anyone who can help Bappy get Exjade (Asunra, desirox)? No one has offered any to me in a long time. Does anyone have any extra or possibly is in a position to help? Let's do right by Bappy, folks. Help him out.
Andy

All we are saying is give thals a chance.

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Offline Manal

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Re: Australian Thalassaemia Association
« Reply #24 on: June 14, 2010, 03:54:36 AM »
I wish i could. We don't have Asunra or desirox here and exjade is more than expensive (can reach $3000 monthly)

How about ferriprox/Kelfer???

manal

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Offline Zaini

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Re: Australian Thalassaemia Association
« Reply #25 on: June 14, 2010, 05:40:14 AM »
Andy,

How would this work,i might be able to get a month's supply or so,i am sorry not for long,but how can i send it to Bangladesh,and first off,i don't know if Novartis will supply me with some extra,but i can try,and when i get it,how can i send it to Bangladesh,would customs allow it?

Zaini.
^*^Xaini^*^

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Offline Bappy

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Re: Australian Thalassaemia Association
« Reply #26 on: August 15, 2010, 07:19:43 AM »
HI there
Thanks you all for trying to help me.But i am not get any help yet.I am happy that every one try.

I have change my transfusion system and iron chelation system.I start my transfusion between 27-30 days
and start kalfar. Ihope its works

Thanks
bappy
I am a thalassamia E-beta patient and I am a M.B.S student

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Offline Andy Battaglia

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Re: Australian Thalassaemia Association
« Reply #27 on: August 15, 2010, 07:10:23 PM »
Hi Bappy,

It helps if you start out with a low dose of Kelfer at first while your body adjusts to the new drug. It is a very good chelator, so I hope you do well with it.
Andy

All we are saying is give thals a chance.

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Offline Bappy

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Re: Australian Thalassaemia Association
« Reply #28 on: August 29, 2010, 09:16:18 AM »
Hi every one,
I need help....... kalfar ,desirox, any thing.  please help me to live.


I am a thalassamia E-beta patient and I am a M.B.S student

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Offline Andy Battaglia

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Re: Australian Thalassaemia Association
« Reply #29 on: August 29, 2010, 06:24:59 PM »
Does anyone have any supply of chelator that they can send to Bappy? This is quite urgent. Even if you send it through me, I will make sure Bappy gets it.
Andy

All we are saying is give thals a chance.

 

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