Did U Know That

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Offline Zaini

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Re: Did U Know That
« Reply #60 on: July 09, 2009, 04:29:29 AM »
Such stupid people still exist in this world  full of knowledge,eh?  ??? :mad

Zaini.
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Offline T @ r ! Q

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Re: Did U Know That
« Reply #61 on: July 09, 2009, 04:43:17 PM »
World is full of knowledge but not everyone has means to access it.
Falling down is not defeat... Defeat is when you refuse to get up...
The one who kneels to Allah, can standup to anything.

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Offline Zaini

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Re: Did U Know That
« Reply #62 on: July 09, 2009, 06:21:13 PM »
I doubt it someone living in UK wouldn't have means to access it ( if thats the case),or they might be just ignorant,not trying to know what actually thal is.
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Offline Emby

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Re: Did U Know That
« Reply #63 on: July 09, 2009, 08:05:49 PM »
not bothering to know..... :(

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Offline cherieann

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Re: Did U Know That
« Reply #64 on: July 18, 2009, 12:26:50 AM »
Zaini don't let it get you down.
The world is a big place with people who have different views and ideas.
The word is ignorance not stupid. People will accept what suits themselves.
The good news is that for every person who is self absorbed, there is another who does care.
We are fortunate to know and understand about Thal whether it is going good and bad and it is us that inform others about thal. Not everyone will want to know but there will always be someone else who does. Cheer up my mate. We need to accept what we can't change and change what we can.
We are awesome people who will always attract true friends who care about us.
Smile cause I love you. :hugfriend I don't care if people are ignorant, thats their lost not ours.
Thalassaemia is a lifestyle not a burden.

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Offline Zaini

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Re: Did U Know That
« Reply #65 on: July 18, 2009, 06:57:30 PM »
Thanks a lot Cherie  :hugfriend this site is the best ,it has given me so many lovely friends and hope and courage,thanks for being there  :hugfriend.

Zaini.
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Offline cherieann

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Re: Did U Know That
« Reply #66 on: July 19, 2009, 03:59:41 AM »
 :agree :exactly :lovethissite
We are all here for each other.
Thalassaemia is a lifestyle not a burden.

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Offline QA

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Re: Did U Know That
« Reply #67 on: August 13, 2009, 03:33:59 PM »
Hi all, this is the first time of mine in this web. I come from Vietnam and am wondering if there is any member from my country. I've read through your sharing and learnt a lot. Thank you very much.
To Andy: am I correct that a thal boy on defexiprox should take vitamin A, E, C and zinc? Can you advice the dose? Tks a lot

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Offline QA

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Re: Did U Know That
« Reply #68 on: August 13, 2009, 04:33:50 PM »
Could any one tell me where to read more about iron chelating agents? In fact doctor has just switched my boy from Desferal sc to oral deferiprox and I would like to know more about iron chelating med? Tks ...

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Offline Zaini

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Re: Did U Know That
« Reply #69 on: August 13, 2009, 06:33:44 PM »
Hi QA,

Please read through our section,"iron chelation corner".The med you are talking about i think is defriprone,this drug is best taken in combination with desferal,it also depends on what is your son's iron level,so do tell us more about your little boy :) .

Zaini.
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Offline Andy Battaglia

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Re: Did U Know That
« Reply #70 on: August 13, 2009, 06:40:04 PM »
The oral version of Ferriprox is rather new and has shown to have far fewer side effects in the digestive system. This has almost elimintaed one reason why patients sometimes could not tolerate Ferriprox. Ferriprox (deferiprone) is the most effective chelator for removing iron from the heart and also offers some cardio protection. The new oral solution has really simplified chelation.
Andy

All we are saying is give thals a chance.

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Offline QA

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Re: Did U Know That
« Reply #71 on: August 14, 2009, 03:58:34 PM »
Tks Zanni, tks Andy, tks U all... But tks is never enough to say to Lisa... Why haven't I found you all any earlier?
My boy is thal beta/HbE. He receives tranfusion once in about three mths to maintain Hb around 9. He used to get 2 vials of Desferal subcutaneously wkly. However he's frighten of injection. he did not use any Desferal in the last two mths and the ferritin level reached 1500. We brought him to Singapore and a doctor there gave him Deferiprox 500mg, twice daily. He is really happy having that oral med. After 1 mth, the ferritin reduced to 800 and doctor tells us to continue that med with the same dose. I hope being in Singapore with experienced in thal doctor will help my son much more. And being with you here i will learn so much... Thank you :smiley
Poor us that not any doctor in our city  has much experience with thal. We received not any clear treatment plan for my boy, no advice on supplement of vitamin C or anything alse...

I've seen many thal children in the hospitals, they almost come from remote areas and are poor,they are not iron chelated cause of expensive iron chelator...  :(

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Offline Lena

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Re: Did U Know That
« Reply #72 on: August 14, 2009, 04:07:14 PM »
That is why this site is so helpful:

It gives people a chance to survive!

It breaks my heart to know there are thals who cannot "rule thal", as Andy puts it...

Lena.

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Offline QA

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Re: Did U Know That
« Reply #73 on: August 14, 2009, 04:08:07 PM »
Sorry Zaini, I did not write your name correctly. But it does mean you are a so good friend of mine now...

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Offline Zaini

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Re: Did U Know That
« Reply #74 on: August 14, 2009, 06:09:46 PM »
QA,

Its ok,you don't have to apologize for such small mistakes :) i hope your boy will be healthy and happy and his ferritin will go even more lower,i am glad you found a good doctor :)

Zaini.
^*^Xaini^*^

 

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