Standard of care

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Offline Angel123

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Standard of care
« on: January 18, 2008, 02:23:08 PM »
I am trying to find out what percentage of patients are being offered a chelation option especially in countries with a large Thalassaemia population- pakistan and India. Do you have an idea of what the breakdown in the thalassemia population is out there- the range of adults and children?
[Sammy

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Offline §ãJ¡Ð ساجد

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Re: Standard of care
« Reply #1 on: January 18, 2008, 03:05:21 PM »
Pardon my ignorance; but I don't seem to understand what you are trying to ask and what do the polling options mean? :huh

Everyone is offered chelation above 2 years of age who have a S.F level above 2000
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Offline Angel123

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Re: Standard of care
« Reply #2 on: January 18, 2008, 03:15:16 PM »
Hi Sajid,
Thank you for responding, sorry that i wasn't clear. I am trying to find out whether all patients are offered a chelation program once they start off being transfused. I have heard that in some countries these programs are not available to all, especially younger children.

I am also wondering what the makeup of patients rae currently- is there more adults than babies? if this is so then it would mean that more people are now becoming aware of thalassaemia (at least I hope so)

Would you have an idea?
Thanks
Sammy
[Sammy

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Offline Manal

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Re: Standard of care
« Reply #3 on: January 19, 2008, 03:12:33 AM »
Hello Sammyjoe

I guess it will be difficult to answer your question because in developing and third world countries, it is hard to  get an accurate statistics about a disease especially that there are many who are born and die without even seeing a doctor. On the contrary, in first world countries where you may find some concern to statistics and findings, thalassemia is rare or uncommom and therefore is not recognized.

Manal

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Offline §ãJ¡Ð ساجد

  • Beta Thal Major
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  • اَسّلامُ علیکم Peace be Upon you
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Re: Standard of care
« Reply #4 on: January 19, 2008, 08:23:43 AM »
Hi Sammy,

There are no statistical figures here but generally we have more Thal. kids than adults as many patients don't reach adulthood. However, things are changing and now we have quite a handful of adult Thals. thanks to better dedicated treatment centers who offer free treatment (including chelation) to everyone.

Awareness is still an issue which needs to be prioritised here as I see new registrations almost every day which is quite worrying. :-\
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