THALASSEMIA N ME

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THALASSEMIA: HOPE OR HOPELESS?

Posted by Goh Chun Hui on March 18, 2012 at 7:55 AM



Even now living as a Thalassemia Major Patient, I still consider myself lucky. Having the world-class healthcare in Singapore. Receiving proper consult from hematology doctor, having all the necessary treatment required like Laboratory Blood Test, Blood transfusion, Mri Safety Screening, Chelation/Chelaters, Supplements and Medications when needed. Not only that, medifund is there to help these patients who can't afford any of their medical treatment.


 

Unlike in some country, patients are less fortunate. They might not have the necessary treatment needed, as either their country might not have the resources or someone paying to provide or build these facilities.There are patients saying they don't have the chance to get proper iron chelation, causing their ferritin level to keep just increasing overtime.



What really upsad me is seeing and hearing babys, kids and childrens having to began with regular blood transfusion and deferoxamine infusion. Seeing both, children the patient and their parents upsad, hopeless expression on their faces without any smile that seen to imagine how their life will be without the money, proper treatment and having to take the pain continuing the treatment in order to survive. Thalassemia, hope or hopeless? The mystery will only be solve after the cure is available.

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4 Comments

Reply Izaidin
12:18 AM on May 12, 2012 
When I used the Thalapump for third time, it won't function and keep mention error 45. I need an advise from you. Thanks.
Reply Goh Chun Hui
9:39 AM on May 12, 2012 
Izaidin says...
When I used the Thalapump for third time, it won't function and keep mention error 45. I need an advise from you. Thanks.

What you can do is check behide your desferal infusion pump, there might be instruction guideing you how you can reset some error. Alternatively you can look through the instruction booklet that come together with your desferal pump. If it still doesn't work contact the desferal infusion company, some list of contact is on my Thal Help page. Hope that helps a little on your problem:)
Reply Harry
12:13 AM on October 31, 2012 
Hi, Do you where to consult if me and my wife planning to have a baby but both of us diagnose with Thala? just want to make sure are the baby going to be okay or is there any prevention action that me and my wife can take?

thanks
Reply Goh Chun Hui
11:05 AM on October 31, 2012 
Harry says...
Hi, Do you where to consult if me and my wife planning to have a baby but both of us diagnose with Thala? just want to make sure are the baby going to be okay or is there any prevention action that me and my wife can take?

thanks


I will suggest you go to the Haematology Centre at the main government hospital, as they had the problem medical techology needed and is more safe plus the price might be cheaper than private.these private hospital/cilnic. Alternatively you can ask around for advise and consider yourself which should you go to. Hope to hear from you soon:)

Best Regards
Goh Chun Hui