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Thalassemia Patients and Friends and thalpal © A. Battaglia 2019





55177 Posts in 5883 Topics by 6170 Members
Latest Member: dave_f

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 1 
 on: January 26, 2020, 07:07:32 PM 
Started by TKDgirl7 - Last post by TKDgirl7
Hi again,
Posting again about my son, now 5.  He's again feeling quite fatigued, he's falling asleep around 5:30-6:00pm and sleeping until we wake him at 7am for school, this happens 2-3 times per week.  Weekends are better.  I just had his ferritin checked and he's still in the low normal range.  I'm waiting on a new CBC, but he has been ranging 9.5-10 for Hb.  We are going to see a dietician and he is scheduled for another visit with with the hematologist in March, which will include an ultrasound of his spleen.  Is this level of fatigue just what I should expect, or are there other things I should look into?  We've already been to the GI and everything came out fine, no bleeding, no celiac disease.  Is there anything else we should check?  Anyone else have thal minor kids with a lot of fatigue?  I know school takes a lot out of him, it's just hard because essentially he gets up goes to school and then is sleeping until school again:(. 

 2 
 on: January 25, 2020, 12:56:56 AM 
Started by slay - Last post by sola
I met a many who claims taking Viagra-like-drugs caused him to have a heart attack. So be careful with these drugs.

 3 
 on: January 24, 2020, 12:34:25 PM 
Started by slay - Last post by positiveanxiety
What doses of L-Citrulline / L-Arginine did you find effective? I am starting with these at 1500mg (citrulline) and 1000mg (arginine), both twice a day ... thoughts?

 4 
 on: January 21, 2020, 10:59:20 AM 
Started by sola - Last post by sola
If a woman has thalassemia, what are the risks during pregnancy and birth?

I know of a woman in Cambodia who gave birth to a baby, not so long ago. The baby was born premature, and died two weeks after birth. I don't know if thalassemia was involved, but it is likely to have been.

If people were tested for thalassemia, and some were found to have it, would there be some women you would advise not to have babies? I suspect women with thalassemia major would be unwise to have children. Is that right? What about women with thalassemia intermedia?

I am not talking about the likelihood of children inheriting thalassemia. I am talking about the risks during pregnancy and birth, when the mother has thalassemia.

 5 
 on: January 21, 2020, 10:39:47 AM 
Started by sola - Last post by sola
Does anyone know of anywhere in Cambodia where people can be tested for thalassemia?

Does anyone know of anyone working in the field of thalassemia in Cambodia?

Does anyone know of any doctors in Cambodia working with pathology labs which test for thalassemia? For example, if a Cambodian doctor worked with a Malaysian pathology lab, they should be able to test for thalassemia.

 6 
 on: January 20, 2020, 10:50:44 PM 
Started by jatin - Last post by restless923
I do get headaches but it’s usually because my hemoglobin has fallen. Meaning not enough blood is going to the brain.

 7 
 on: January 10, 2020, 01:50:03 PM 
Started by Md. Abdul Hakim - Last post by Md. Abdul Hakim
last 09/01/20 was the first transfution of my 21 month baby. It was terrible  for us. Another transfution have to get today.
My baby's hb was found 7.7 dl so the doctor said she has to got transfusion unless her hb level reach 12dl.
Dear andy please advise us if hb level is maintain within 7.7dl then any problem arises her growth and brain development?Her platelets was decreased at 70000. Why  it is decrease?
..... Md. Abdul Hakim       

 8 
 on: January 06, 2020, 04:00:08 PM 
Started by Rachel Martin - Last post by Andy Battaglia
It probably isn't Raynaud's but the poor circulation found in thal minors that causes the cold extremities. Natural Vitamin E may also be of help in improving the circulation.

If the doctor has any knowledge of thalassemia and its effects on circulation, it would be easier to get a note. I have heard from many minors who have the same problem and it is obviously due to poor circulation caused by the effects of thalassemia on both the health of the blood vessels and also caused by the "debris" that is in the blood of thals. This debris is the by products of the inefficient erythropoiesis present in all forms of thalassemia. The debris hinders circulation and is the main cause of the hypercoagulable state found in thals.

 9 
 on: December 27, 2019, 01:55:19 AM 
Started by zahra - Last post by zahra
Dr Kenneth Cooke.
Cost varies alot depending on what problems arise, how much hospitalusation is needed,etc.

 10 
 on: December 15, 2019, 07:38:33 AM 
Started by Andy Battaglia - Last post by smit-17
How many % reduction  in transfusion burden
For β0/β0- major?

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