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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2019

55129 Posts in 5872 Topics by 6155 Members
Latest Member: S1m0n3

This is Thalassemia Patients and Friends,
dedicated to its founder,
Lisa Cammilleri.
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Author Topic: E/Beta Thalassemia  (Read 176 times)
Md. Abdul Hakim
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Posts: 6

« on: September 24, 2019, 11:42:31 AM »

Hi friends. I am from Bangladesh,  and new to this forum.

Very recent my 18 moth baby (girl)  falls sick ( Fever and cold) my doctor suggest me to test CBC test.  In this test her Hb found 8.3g/dl. then the doctor  suggest me to test Hb electrophoresis. We  just knew that she is patient with HBE Beta Thalassemia. my doctor said to us we have to start transfusion. Although she is fully active . No symptoms are visible. I am providing below his blood report .

Hb electrophoresis

Hb A = 5%
Hb F =49.4%
HB E= 42.1%
Hb A2 = 3.5%

Hb         8.3 g/dl
RBC      4.17 mill/cumm
MCV      59.7fl
mchh     19.2pg
rdw        27.9%
WBC      11950/Cmm
Platelate  411000/Cmm

Ferritin   171.71 ng/ml
S Billirubin  1.1mg/dl

1. Is he Thalassemia Major or Intermedia?
2. Is it essential to required transfusion ?
3. Can she lead normal life?
4. Have any natural treatment to increase HB level but without having iron.

Please give me some advice. She is our only kid, we are now feeling helpless and  her mother has sick to know it.
Since He is our only kid, we are now feeling helpless.

Md. Abdul Hakim

« Last Edit: October 01, 2019, 01:03:50 PM by Md. Abdul Hakim » Logged
Andy Battaglia
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Location: In my heart, Maldives

Gender: Male
Posts: 8594

Will thal rule you or will you rule thal?

« Reply #1 on: September 30, 2019, 06:33:14 PM »

It may be premature to recommend transfusion. The presence of some HbA in the electrophoresis shows that the beta thal is a beta+. If it was a beta zero mutation, there would be no HbA observed. Because it is beta+ and the child's Hb is still above the 7-8 range, transfusion would be optional at this age, unless it is demonstrated that growth and development are seriously affected. She may have a more intermedia than major condition, and time will tell, but right now, I wouldn't agree that transfusion is necessary. Because HbE beta thal manifests at different ages in different patients, it is often best to wait and see if it stays as it is now, or if the Hb continues to drop lower.

I would suggest that you give her L-methylfolate (not folic acid) and that you encourage a healthy diet, with fresh fruits and vegetables, especially green vegetables. Have her Hb checked periodically to see if it is stable. If it does continue to drop, the question of transfusion can be revisited. There can be differences between depending on the specific beta+ mutation, so I would say at this young age, it can't be predicted how it will go. A DNA analysis that tells you the specific mutation may help, but for now, as long as she is healthy, I would not suggest transfusion.

Either way, she can lead a normal life. If she does eventually require transfusion, she may be able to use a new drug, Luspatercept that should be available in the next two years. This drug increases Hb level and will most likely free many intermedia patients from transfusions. This should become available within the next two years and will have the ability to affect treatment for most patients who require transfusions.
And, transfusing patients already do lead normal lives. Compliance with the transfusion/chelation routine is required for transfusing patients, but this does enable them to go about normal lives.



All we are saying is give thals a chance.
Md. Abdul Hakim
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Posts: 6

« Reply #2 on: October 04, 2019, 02:09:40 PM »

Thanks Andy Sir.
You are great.  You are  an Angel  of many thal family.   

Md. Abdul Hakim
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Posts: 6

« Reply #3 on: October 14, 2019, 09:29:59 AM »

Dear Andy
could you tell me please what is the doses of L-methylfolate?

Md. Abdul Hakim
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