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Thalassemia Patients and Friends and thalpal © A. Battaglia 2019





55424 Posts in 5933 Topics by 6263 Members
Latest Member: anouj

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 1 
 on: January 12, 2021, 12:55:49 AM 
Started by tobassam - Last post by Andy Battaglia
A teaspoon or more per day is therapeutic. It can also be used on the skin to aid in healing of wounds.

 2 
 on: January 02, 2021, 09:07:56 PM 
Started by tobassam - Last post by CrazyPharm
what would be the adult dose for the honey? thanks

 3 
 on: December 19, 2020, 10:51:21 PM 
Started by ludo - Last post by Slade
Hi Ludo,

Don't get discouraged by your performance in sports. Maybe we thals can't be top athletes but for sure we can enjoy a lot of physical activity. We do have to be extra careful not to overdo it though. I learned this the hard way because I wouldn't listen to my doctor who told me that overtraining, sleep deprivation and binge drinking do not go well with a thal person.

 4 
 on: December 19, 2020, 07:01:15 PM 
Started by ludo - Last post by Andy Battaglia
You may never notice anything from taking vitamin E, but be confident that it addresses the low antioxidant problems facing thals, and also helps to prevent the blood clotting issues commonly found in thals.

 5 
 on: December 19, 2020, 06:59:13 PM 
Started by kaleem - Last post by Andy Battaglia
Dark skin in the knuckles and around the nails shows iron is too high.

 6 
 on: December 19, 2020, 06:58:01 PM 
Started by sah - Last post by Andy Battaglia
I have no updates at the moment. I did just email the company and will inform if I get a reply.

 7 
 on: December 16, 2020, 11:04:44 PM 
Started by ludo - Last post by ludo
I want to thank the members of this forum for the useful information that you offer.

I have thalassemia minor. Although curiously no one in my family has it.

I spent my adolescence with dizziness and mild but strange symptoms: tiredness, lack of concentration, weakness. Some people told me that it was psychosomatic.
My doctor prescribed medicine to treat vertigo, or rare medicines. He didn't know what to prescribe for me.

Consuming zinc, folic acid, and B12 improved my health.

The consumption of L-carnitine (500 mg / day) has made practically all my symptoms disappear, especially the dizziness. I don't usually remember that I have thalassemia.

Consuming vitamin D (20,000 or 30,000 IU / week) made me feel a little better overall.

With vitamin E, I didn't notice anything. Although I started taking it when I had already improved.

It is also clear that it helps to maintain a good level of testosterone, antioxidants and to rest well.

In this forum I have read about thalassemic marathon runners.
But for some strange reason (thalassemia, pulmonary hypertension, a little obese?) I get tired too quickly, to the point of dedicating myself to intellectual professions, and avoiding more physical ones that I liked. It's sad. My sports scores are good, but in endurance tests I sink. And if I train frequently, my hemoglobin and hematocrit start to drop.

I wish there was a safe, oral and cheap drug like Reblozyl for minor thalassemics. I guess that would make me almost 100% normal. But it's only a dream.

 8 
 on: December 12, 2020, 02:42:46 PM 
Started by kaleem - Last post by kaleem
We dilute Asunra in a bottle of water and then add milk powder and he drinks it during sleep in the morning. So it's not like taking all the glass of milk once but sometimes may be over a period of 30 to 40 minutes until kid finish consuming all the bottle. May be this is the reason that Asunra was not so effective so far.

 9 
 on: December 10, 2020, 05:43:44 AM 
Started by kaleem - Last post by maha
Only on Asunra, from the age of 2yrs. Initially he was put on 20mg/kg for a couple of years.. But it wasn’t helping, the numbers kept rising . So the dose was increased to 32/mg- and gave it in split doses. This really helped in getting the numbers down. And we never missed a dose. I used to mix it with a little orange juice about 30ml,  give him a glass of water in his hand. Initially used a medicine dispenser spoon- he would gulp it down and quickly drink water over it. Once he got used to it, he would drink it straight from the glass without any fuss.

 10 
 on: December 09, 2020, 04:28:26 PM 
Started by kaleem - Last post by kaleem
Thank you so much for your kind response. I will try to find IP6 in Karachi Pakistan. Your son during transfusion years was only on Asunra or other chelation as well? thanks

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