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54908 Posts in 5834 Topics by 6080 Members
Latest Member: mareeya

A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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 1 
 on: Today at 04:49:48 PM 
Started by Shaheera - Last post by Andy Battaglia
Kaleem, has there been any improvement? If problems persist, try contacting Dr Sodani for advice.
Email to info@curethalassemia.org


 2 
 on: Today at 04:47:38 PM 
Started by Its Ironic - Last post by Andy Battaglia
According to Dr Thomas Coates from LA, the only thing that really works to stop the growths is transfusing to a high Hb level. He has found that some patients have to maintain an Hb >11 to defeat the masses. Since there is a real danger to your spine, I agree that transfusion should be done and that you should be raised to a high enough Hb to stop the growth of red blood cell masses.

 3 
 on: Today at 04:45:19 PM 
Started by AliAlkaabi - Last post by Andy Battaglia
Many thals find the only solution is a daily nap in the afternoon.

 4 
 on: Today at 04:43:54 PM 
Started by Dharmesh - Last post by Andy Battaglia
 You need combination chelation. Your ferritin is too high to handle with just one chelator. Any competent thalassemia doctor will tell you that. If you can manage to get the oral chelator, I can advise you on dosage.

How large is your spleen? Do you take folate?

 5 
 on: Today at 04:40:23 PM 
Started by hopefulmommy - Last post by Andy Battaglia
 Was she using Exjade previously?

 6 
 on: Today at 04:39:42 PM 
Started by Caligurl77 - Last post by Andy Battaglia
It would not be beta thal, since the HbA2 is low. Beta minors have a high HbA2. It does not look at all like you have iron deficiency. In addition to the normal iron numbers, your RDW is normal and it is high in iron deficiency. Your MCV is normal, but your Hb is low. I think if it's thalassemia, it's alpha thal carrier status. In adults, it usually will take a DNA analysis to determine if alpha thal is present.

 7 
 on: January 18, 2019, 06:59:14 AM 
Started by Polly58 - Last post by Polly58
Thanks for the information Andy

My GP has done blood tests and tells me that my blood is normal for me (109) and the red cellsl are small but again normal for me.

He says my inflammation levels are up but that is not surprising given that I have been ill.

He is referring me to a haematologist but also suggesting that I may have ME

I have not tried any of the supplements you suggest as I would like to see what the haematologist has to say first

In the mean time I hope to get back to work next week but not really sure I am fit to do so

 8 
 on: January 18, 2019, 06:52:28 AM 
Started by kaleem - Last post by kaleem
yesterday he received 2 doses of Filgen and at mid night he was also transfused with platelets.. his early morning results were good.. WBC was 8.8 and Platelets 55000.. HB was down from 10 to 9.6.. today is day +24 ..

 9 
 on: January 16, 2019, 09:53:35 PM 
Started by Shaheera - Last post by kaleem
I would like to know about your daughter condition now.. Did you opt for Second BMT?

 10 
 on: January 16, 2019, 09:30:33 PM 
Started by kaleem - Last post by kaleem
yesterday he received one filgen injection and today is day 22 and his WBC fell more to 3. he got another blood transfusion yesterday .. platelets are getting transfused everyday..

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