Thalassemia Patients and Friends
Miscellaneous Forums => Thalassemia Associations => Topic started by: Miaki on February 12, 2006, 05:13:57 AM
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Australian Thalassaemia Association
C/O 333 Waverley Road
Mount Waverley
Victoria 3149
AUSTRALIA
Phone: +61 3 9888 2211
Fax: +61 3 9888 2150
To contact via email you can write to info@thalassaemia.org.au for the time being.
http://www.thalassaemia.org.au/
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The ATA has a fantastic blog at http://australianbloodenquirer.blogspot.com/
It also lists all the details of the state associations right across Australia (where they exist).
EnjoY! :wink
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That's a great blog! Thank you for posting that, eiRini! :biggrin
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Hi there i am bappy from bangladesh.i suffaring thalasamia from21 year. i takeing treatment in bangladesh,but in bangladesh there have no better treatment,so i dicided to go out in this country for treatment.if you have any option pleace notic me or how can i get better treatment plz suggest me.
thank u so much
bappy
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Hi Bappy,
Are you aware of the ASHA – Thalassemia Center in Dhaka? It opened in 2008. Please check the info at
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
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Hi there,
it's me bappy again.i am new member in this side & i am trying to contact with you,one kind person give me this address and then i able to contact with you.I live a small poor family.I am a thalasamia patient.My father saparate us when i was 3 year old.only couse of my thalasamia and he married another women.My mother is very poor and she not able to carry my all treatments expense's.
My mother spent her all money for my treatments.She already unable to carry my study and treatments expense's,now i need your help.I am also a member of ASA thalasamia faundation my Id number is 387.When i ask some help from them they refusce me and there treatment expencess nearly 6000 taka which is not possiable for me.Anyhow i running my tansfution treatment.I want to live in this wanderful world.Please Please help me.
I therefor,pray and hope that for a financial support for my treatment and give me a chance to live this wonderful world.
Thank you for your support
MD.Saddam Hossain (bappy)
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hello friends
it's bappy againe.may be 15 day after i sing in this side,i hopping some kind of responce but i desipoiented.i am alowyes decipoiented when i start some thing.my 22year is going like this.
thanx all of you for trying to help me
bappy
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Bappy,
I contacted Dr Robin from the thal center and he said they can provide all your treatment at no cost, except for the chelator, because they do not have enough funding to provide for chelators for the many patients. If anyone has any ideas for Bappy and how he can get access to chelation, please let us know ASAP.
Hi Andy,
I gone through his message in the forum. I know this boy for a while. He started writing appeal for help an year ago to TIF and some other places. They referred him to us. I talked to him once though didnt meet him.
We at ASHA Thalassemia Center offer best possible treatment in Bangladesh given the resource limitation. You might know that there is no government support neither to thalassemia patient nor to us as an organization. We import the medicines from India which are costly. Transfusion and lab testing also costs money. Therefore we can not provide free treatment which will risk our sustainability. Given the case, I offered him medical consultation at our center without any charge but we cannt give free transfusion or iron chelators. Sometimes we get Desferal and Exjade as gifts that we distribute among patients like this who visit our center regularly.
The boy is getting Desirox (Indian Deferasirox) from our center more or less regularly with occasional pause. The 6000tk(80$) he seeks in his message is the cost of iron chelator he requires monthly. He is indeed getting help from our center but I am afraid we can't offer iron chelators free.
I am glad that you wrote me. I don't look into the forums regularly. If you find Bangladeshi patients seeking assistance, please let me know.
Best Regards,
Robin
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
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Bappy,
I am really sorry to hear about your situation,aren't their any non govt organizations in Bangladesh which can support you ?
Zaini.
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Hello zaini
Thanks for your massage.sorry for late replay b'couse i used my friend computer
for this reason i able to replay you.Yes there have some organaigation which can support me.
But there treatment expencess are very high,that i am unable to afford b'couse of my family situation is not well.please pray for me
thanks for your massage
Bappy
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I have just read (I do not know how I could have missed it) Bappy's message and it made me feel very sad. That's the reason I consider TIF's role should be to take an active part in third world countries.
What is your ferritin, Bappy? and on what chelators are you on?do you take them every day?
Lena.
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I agree that TIF should be doing far more, but I also have to add that the problem of thalassemia is vast in Asia and as countries develop, we are beginning to see just how extensive the problem is. Whereas previously, most thals died at a very young age in these countries, with the new advances in treatment and the economic development of these countries takes place, patients are getting minimal care at the least, leading to patients surviving and creating a new demand for treatment. When you look at the scope of the problem and how many thousands of thal majors are born every year, we see that the only long term solution is testing and working towards elimination of thal major births. Some think this is harsh, but sometimes we need to separate ourselves from the emotional issues (I have talked to thals who are steadfastly opposed to trying to limit the births of majors) and look at this problem is a realistic manner. And once reality is introduced into this subject, economics has to be taken into account and frankly, the world cannot afford to take care of the amount of thal majors born every year. So either we say forget the poor, or we take responsibility and do everything we can to stress the importance of testing and even pass laws requiring it before marriage. It would really help if all thals themselves could get on board with this way of thinking.
The problem in Bangaldesh is immense. In addition to beta thalassemia, HbE beta thal is also prevalent. Bangaldesh is also one of the poorest nations on earth. We have to be very thankful for people like Dr Robin and his group. While Robin's family has moved to Canada and his sister has access to top notch treatment, Robin has chosen to remain in his native country to work with thals. He could easily follow his family to Canada and become a well off doctor, but he has chosen a path that is not about himself, but instead about others. I plead for anyone who has funds or materials and supplies to donate, to please contact the treatment center run by Robin. They need help. They are providing blood for patients but do not have the funding to provide chelators, supplies and other medicines. What we can each do, even if only in a small way, will help patients live. We also need to continuously stress these problems to TIF and all international organizations that can help.
Bappy, I have talked to Dr Robin and he does want to help you. Please call him as soon as possible.
For anyone wanting to help,
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
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hello lena mam,
I am very happy for your replay.yes,I also think TIF should do that.I attend last seminar in sheshu thalasamia hospital.There i able to see Mr.gorge he came from TIF,But unfortunately i am unable to talk with him.
lena mam,you want to know about my ferritin,chelators and other things.
my ferritin is 2710.I take my blood test,last two month ago,I taken deseirox tablets,not regularly because some (money) problem.I hope next month i can continue that.I take my blood transfusion from red-crisent blood center every 22 days after.Next morning i have to visit there for transfusion.please pray for me because last time its take reaction.
Thanks
Bappy
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Bappy,
Have you talked to Dr Robin recently?
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Hi There
This is bappy again.I am very happy to mail you.You asked me,am i talked to Dr.robin?
Not yet,I am unable to talked with Dr.robin because he little busy for preparing his examination.
But i am able to talked with Riffat apu(sister).She told me to came next Friday.I conformed you that,
I am going to visit them as soon as possible.you know i have a reaction in last transfusion.I am still
suffering bone Paine and eyes problem.For this reason i am late to visit them.After visit them,I mail
you again
Thanks
Bappy
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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.
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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
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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
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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
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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.
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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
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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
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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
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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.
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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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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.
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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
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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.
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Hi every one,
I need help....... kalfar ,desirox, any thing. please help me to live.
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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.
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Need suggestion
Hi
This is bappy.I need little suggestion from you all.my farretin level up from 3227 to 4365.doctor suggest me to take 48 desfarol in a month.
its very painful.Do you have any suggestion that, how can i make it painless !..and how many desfarol i can use at one time. please suggest me .
Thanks
Bappy
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Yes Bappy this is the best way to reduce your ferritin quickly
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Bappy,
Are you using anything to numb the area before you place the needle? Emla cream is used for this. Do you move the needle around to different sites? You really do need more chelation. Is Kelfer an option for you?
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Bappy, it's a while since I've used s/c desferal but have you tried hot or cold compresses after the infusion has finished. I used to rotate injection sites from abdomen (left then right side), arms and thighs to give each site a good rest. I found the itchiness the worst part (and the lumps, oh I feel your pain). Am sure you can also mix hydrocortisone with the desferal for high dosages to reduce the irratation, but you would need to check this with your doctor or pharmacist. How much water do you mix the desferal with? I used balloon infusors as a teenager and they were mixed 48mls given over 48hours, the volume of the drug was awful and caused me lots of skin irritations. I much preferred the 10ml syringe pump method. Hope you get it sorted soon.
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Thank you so much for the very useful suggestion. I am continuing my desfarol.actually i am start with kalfar at fast
but it not support me. so, i start desfarol.48 desfarol in a month it's very hard task but i try.i reach 24 in this
month.Now few days i am suffering join pain in my leg and shoulder.i take D3 calcium
tablets for calcium (nature made 500mg),but it's not worked.please pray for me.
Thanks
Bappy
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Bappy,
Sending my prayers you way.
Wishing you the best always,
Sharmin
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Hi friends
This is bappy.I hope all my friends are remember me.I have some good news to share with you all.
I just passed my graduation in 2nd division.I wish you all stay with me.
please prayer for me and support me.
Thanks
Bappy
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Bappy that is such great news! I wish you continued success and happiness!
Sharmin
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Congrats Bappy :thumbsup way to go.
Zaini.
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Dear Andy
How are you.I wish you having a good time over there.
long time i am unable to comment because i am little bit in crisis.
I do not know that how can i go before, because i face many problems
which i never wanted to face.I need regular support by any one if
any one want to support me.please help me.
dear Andy i have some question,i hope you solve those !
* Is Desfarol can be used in vain directly ?
* Can i take desfarol and desirox/exjade/asunra ?
* How can i maintained my health { because i lost 5 kg after i start kalfar} ?
* if i want to go other country for my better treatment then how can i process ?
please help me.
Bappy
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Hi Bappy,
Desferal can be taken by IV. This can even be started in your center and then taken home with you. It is more effective than subcutaneous desferal. Desferal and Exjade/Asunra can be used together. This has been tested successfully in small trials and also by many patients. It will speed up iron removal to use the combination. The weight loss with kelfer is surprising. Often patients gain weight while using it. Is it causing stomach problems? I do not know a lot about moving to other countries for treatment and think it is very difficult for most countries. However, foreign students at public universities in the UK can get treatment under government health programs. Even that could be subject to government budget cuts. Is Dr Robin still at the same center?
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Dear Andy
I am very happy for your replay.Its very useful answer for me.
Dr.robin still in the same position and the same organization.
we meet last 7th may in the thalasamia conference.
bappy