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Have a Great Trip, Sharmin!

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Andy Battaglia:
Sharmin,

I was elated to hear that Dr Vichinsky commended you on using IP6. I wasn't sure the thal establishment even knew about it. We have been promoting its use for quite some time here and I have always stressed that its antioxidant properties are what may be its best feature. I am happy to see that the Dr concurred.

I really hope people pay serious attention to the advice about supplements. I feel that many people are overlooking this and thinking that they don't really make much difference. The stresses thals are under make supplementation absolutely necessary for good health.

Andy Battaglia:
Sharmin,

What did Dr Vichinsky recommend for supplement dosages? What did he have to say about vitamin C? Is it safe for thals to take?

Sharmin:
Hi Andy,

We had been giving my son 100 IU of vitamin C which we gave him 1/2 hour after we began desferal.  In Oakland they asked us to increase it to 250Iu of vitamin C. 

From my understanding - thals need vitamin C - but they should not have large doses with meals because it increases iron absorption from the meal - as you have mentioned in the past.  Vitamin C also releases iron from the liver - this is the reason we administer it when desferal is on because it frees up iron for desferal to excrete.  However, in the absence of desferal - if vitamin C frees up iron it does not have anything to bind to - at this time it can enter other organs such as the heart and cause damage.   Small amounts of vitamin C between meals would not be as harmful - but it is best taken with chelation. 

The doctor stressed the importance of avoiding free iron - because it is very harmful - and along with chelation he stressed the need for antioxidants to bind it and avoid its oxidative damage. 

I am still waiting for a more complete list of supplements - as well as more information regarding vitamin C, calcium and magnesium.  Either they will email it to me or I will request it during my next visit in 3 weeks. 

I hope this was helpful,

Sharmin

Andy Battaglia:
Sharmin,

That's good info. 250 mg of vitamin C is some help. 100 mg is such a low dose and won't do much for thals who are generally deficient in C. I wish the dose could be even higher because it is water soluble and disappears from the system within 12 hours and most thals have a great deficiency in C, which is a powerful antioxidant.

I hope everyone pays close attention to he information Sharmin is giving us about supplements. This is crucial info that can help the health of thals in very real ways.

Sharmin:
Andy,

I was also told during our visit that antioxidants are so vital in preventing iron damage in thal - that they are currently conducting a study involving the iron induced damage and the role of vitamins in its prevention - in thalassemia. 

Sharmin

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