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21
Thalassemia Intermedia / Re: Student program in Australia for people with Thalassemia.
« Last post by Andy Battaglia on September 09, 2023, 08:16:28 PM »
You may have trouble getting coverage in Australia. You could try contacting the Thalassaemia and Sickle Cell Australia (TASCA) for more information at https://www.tasca.org.au/contact-us/at
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Thalassemia Major / Re: Luspatercept ??
« Last post by Andy Battaglia on September 09, 2023, 08:11:11 PM »
This is the same drug as Luspatercept, which has been used with some success by many US patients. It does not suit everyone or work for everyone, but it is definitely worth trying to see if it can help individual patients maintain a higher Hb level and reduce their transfusion needs.
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Thalassemia Minor / Re: On the nutritional needs in thalassemia minor, based on reliable science
« Last post by Andy Battaglia on September 09, 2023, 08:08:59 PM »
If the diet does not include high amounts of meat, I see no reason to regularly monitor iron in thal minors. As with all of us, it should be tested annually to make sure the iron level is in range and not too high or low.
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Thalassemia Minor / Re: On the nutritional needs in thalassemia minor, based on reliable science
« Last post by Andy Battaglia on September 09, 2023, 08:07:35 PM »
What I would point out is that all humans need iron, and that there are many thal minors with iron deficiency, more commonly in females than males. Iron from veg foods is not well absorbed, and no more than 40% of the available iron is absorbed, as opposed to the very high percentage of iron that is absorbed form meat. I never advise avoiding most veg sources of iron.
Both carnitine and arginine have very similar properties and both can help fix nitric oxide in the body. This is extremely important to the health of the circulatory system.
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Thalassemia Minor / Re: Iron-rich foods for thal minor
« Last post by Andy Battaglia on September 09, 2023, 07:36:09 PM »
It is not actually very high in iron. 1.6 mg per 100 grams of Bael. Thal minors do need iron in their diets, so it should not be avoided completely.
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Thalassemia Minor / Re: Supplements for thal minor
« Last post by Andy Battaglia on September 09, 2023, 07:32:42 PM »
I don't think more testing is needed. A wholesome diet and good quality supplements are a good approach to living with thal minor.
27
Diet, Nutrition and Supplements / Re: Wheatgrass Juice Dosage for 5 years old
« Last post by Andy Battaglia on September 09, 2023, 07:31:20 PM »
Since wheatgrass is a food, any reasonable dosage is fine to use. 2 g daily is fine for a child.
28
Curing Thalassemia. Bone Marrow & Cord Blood Transplant / Re: Need suggection about Haploidentical BMT
« Last post by Andy Battaglia on September 09, 2023, 07:28:56 PM »
I can't advise on whether someone should make that choice. Much depends on how close the match is and the health of the recipient. I( would suggest getting the iron lower before starting the procedure, if that decision is made.
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Thalassemia Minor / Blood work for my son
« Last post by VB on September 07, 2023, 04:45:22 PM »
Hello all,

Here is my 11 year old son's bloodwork. He is very energetic and active. Doesn't have any pains. Our main goal for him is to grow more bone/weight, more facial growth and muscle mass.

VitD : 16 (30-100)
B12 : 749 (200-771)
Folic acid : >20 (4.5-20)
Ferritin : 43.9 (30-400)
Hg : 10.2 (12.5 - 14)
HEMOGLOBIN ELECTROPHORESIS : consistent with Beta Thalassemia Minor.

We have started 5000 IU of Vitamin-D3 drops for him, per day.

Kindly mention any comments. I would like to do another blood work for TIBC and Iron. Does he need to take any iron supplementation ?
30
Thalassemia-related Issues / (Osteoporosis) difference between ibandronic acid and
« Last post by nice friend on July 06, 2023, 10:12:17 AM »
Hi Andy and all,
 I have been on ibandronic sodium for stress fracture bcoze of osteoporosis,  and had 2 doses of Bionic 3ml injection (ibandronic sodium) , ( 1st in march-2023 and 2nd on june-20-2023) , now I just visited to another orthopedic and he precripted me Bonviva 3ml injection(ibandronic acid)....

I want ask/know is there any difference between ibandronic acid and ibandronic Sodium???.. can i go for ibandronic acid right after just having the dose of ibandronic Sodium??? Should i start the prescription of new orthopedic??? Please guide me in-details..
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