Did U Know That

Such stupid people still exist in this world  full of knowledge,eh? 

Zaini.

World is full of knowledge but not everyone has means to access it.

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.

not bothering to know.....

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. I don't care if people are ignorant, thats their lost not ours.

Thanks a lot Cherie  this site is the best ,it has given me so many lovely friends and hope and courage,thanks for being there  .

Zaini.

 
We are all here for each other.

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

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 ...

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.

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.

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
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... 

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.

Sorry Zaini, I did not write your name correctly. But it does mean you are a so good friend of mine now...

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.