Thalassemia Patients and Friends

Discussion Forums => Miscellaneous Questions => Topic started by: Angel123 on January 18, 2008, 02:23:08 PM

Title: Standard of care
Post by: Angel123 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?

Title: Re: Standard of care
Post by: §ãJ¡Ð ساجد 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

Title: Re: Standard of care
Post by: Angel123 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

Title: Re: Standard of care
Post by: Manal 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

Title: Re: Standard of care
Post by: §ãJ¡Ð ساجد 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. :-\