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Sajid's dove

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Thalassemia Patients and Friends and thalpal © A. Battaglia 2019





55394 Posts in 5926 Topics by 6238 Members
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 1 
 on: October 26, 2020, 04:36:28 PM 
Started by Sharmin - Last post by Andy Battaglia
If it's only a small amount, it may not be cost effective to mail outside the country. Postal rates have gotten ridiculous.

 2 
 on: October 26, 2020, 04:35:37 PM 
Started by ironjustice - Last post by Andy Battaglia
Yet, many doctors scoff at the idea of drinking tea therapeutically. I do wish they had also tested black tea to settle the discussion over whether they have equal properties.

 3 
 on: October 26, 2020, 04:33:29 PM 
Started by Slade - Last post by Andy Battaglia
Milk thistle is an amazing herb, even though it is so mild. The only real negative side effect is loose bowels when too much is taken.

 4 
 on: October 26, 2020, 04:32:11 PM 
Started by Madhavi - Last post by Andy Battaglia
Madhavi,

It is so good to hear from you and learn that your children are doing well. I love the follow ups to know that a BMT worked well. It is such a blessing. I hope everyone continues to do well.

 5 
 on: October 26, 2020, 04:29:48 PM 
Started by erolav - Last post by Andy Battaglia
In general, it is believed that thal minor gives some protection against heart disease. Some dispute this, but most studies have confirmed this.  A healthy diet may have more to do with your experience than thal does, though. As far as PVCs. they are often related to low magnesium in thals and a magnesium supplement can often remedy the issue. I do not carry thal, but after a couple years on magnesium, my heart palp disappeared. The doctor didn't even notice until I asked him if the EKG showed the palp. He said it was gone. Magnesium and calcium control each side of the heartbeat, and often, irregularities are related to low magnesium.

 6 
 on: October 26, 2020, 04:08:11 PM 
Started by erolav - Last post by Andy Battaglia
A. Thalassemics do get malaria and are treated as anyone else. They are less likely to die from malaria, as the virus does not thrive in their systems, most likely due to the thal blood character.

B. Thals from minor to major do have some protection are are less likely to get as sick when they do get malaria. The resistance is what the malaria zones in the world also have high percentages of thal carries. Thal carriers are far less likely to die from malaria and can pass their genes on.

C. The joint and body pain seems to be caused by your virus exposure, but it's difficult to say if thal makes that more likely. I do hear much anecdotal evidence that thals often have autoimmune disorders, but so does the general public, so it's hard to say it's due to thal.  Thal trait should not interfere with your ability to use therapeutic drugs, except when they contain a sulfur compound. It's best to check online (you can usually see the molecular makeup on Wikipedia) before starting any new med to screen for sulfur drugs. Sulfur can cause sudden hemolysis in many minors and cause the hemoglobin level to suddenly drop.

 7 
 on: October 23, 2020, 02:09:42 PM 
Started by ironjustice - Last post by ironjustice
This seems to say, one third increased iron removal by three cups of green tea per day.

'net reduction in green tea and control groups were 1289 ng/ml and 871 ng/ml'

Green tea influence on iron overload in thalassemia intermedia patients: a randomized controlled trial
Hayder Al-Momen 1, Hussein Khudhair Hussein 1, Zaid Al-Attar 2, Mohammed Jalal Hussein 1
F1000Res
2020 Sep 16;9:1136. doi: 10.12688/f1000research.25553.1. eCollection 2020.
PMID: 33024552 PMCID: PMC7520712 DOI: 10.12688/f1000research.25553.1
Free PMC article
Abstract
Background: Although iron chelation therapies have been available for many years for thalassemia intermedia patients, iron accumulation remains the major cause of death. Therefore, the need for additional chelation options is in demand. This randomized controlled study aimed to understand the effects of green tea on iron balance in thalassemia intermedia patients. Methods: Using a random selection method, 141 thalassemia intermedia patients were initially screened for inclusion in this trial; only 68 patients included after applying exclusion criteria. Two equal groups were generated (n=34/group): green tea (three cups/day after meals) + usual treatment (deferasirox iron chelator and on demand blood transfusion); and control (only usual treatment). The study lasted for a period of 12 months. Patients failing to comply to the trial methodology were excluded, leaving a final total of 29 patients in the green tea group and 28 patients in the control group. Liver iron concentration, and serum ferritin were assessed at baseline and 12 months, while hemoglobin levels were assessed monthly. Results: At baseline, both groups were matched regarding general demographics. At 12 months, the net drop of liver iron concentration in the green tea group (7.3 mg Fe/g dry weight) was significantly higher than the control group (4.6 mg Fe/g dry weight) (p<0.05). This was also seen with serum ferritin; net reduction in green tea and control groups were 1289 ng/ml and 871 ng/ml, respectively (p<0.05). Hemoglobin levels were slightly higher in the green tea group compared with the control group, but this was not significant. Conclusions: Regular green tea consumption had a significant capability to improve iron deposition in thalassemia intermedia patients who already undergo deferesirox iron chelation therapy. Trial registration: UMIN-CTR Clinical Trials Registry, UMIN000040841 (retrospectively registered June 21, 2020).

Keywords: Deferasirox; Liver iron concentration; Serum ferritin; Thalassemia..

Copyright: © 2020 Al-Momen H et al.

 8 
 on: October 19, 2020, 08:19:57 AM 
Started by Slade - Last post by Slade
Great, thank you Andy for the suggestion. This magnesium formulation looks great and I'll definitely give it a try. I think they can deliver directly from their EU branch
I was considering taking milk thistle (again after 10 years) because of what's written in this article: http://www.nutritionalwellness.com/archives/2010/may/05_bone.php
but now as you say it may also help with my gallbladder that's definitely something I should add to my pill box  

 9 
 on: October 13, 2020, 07:55:08 AM 
Started by Madhavi - Last post by Madhavi
Warm greetings to everyone at this wonderful group.
I have often questioned myself about not visiting the group again, reprimanded myself for doing that. I had too many mixed feelings about doing so. I logged in today after a very long time and realised that I had missed quite a few messages. Apologies for that!
This post, I now realise as I sit back and look into the times that have gone by, was written 11 years ago. Mohanish completes 11 years of his transplant this year, in another fortnight. He is a tall handsome 14 year old boy with a mind of his own and studies in grade 9 in Vadodara, Gujarat, India. His sister, Masumi is a pretty young woman of 12 years and studies in grade 7. Puberty has hit them both and you guys can only imagine how that leaves me to tackle them or rather not!
They are only reminded of this aspect of their lives when we mention it to them. It all seems such a distant past, even to us. But today as I sat reading it, I felt the goosebumps again, had tears in my eyes again. I realised how lucky we were that we were blessed to have angels like you, with us, praying and sending your good wishes.
I send a warm virtual hug to everyone, more than what family or friends can mean. You guys have all been truly selfless and may you all stay blessed with a lot of love, happiness and peace.
Will try and upload some of his relatively recent images for you all. (He hates the camera he says and does not want to be photographed. His selfies at social sites don't count in these!)
Lots and lots of love to all of you,
Madhavi

 10 
 on: October 07, 2020, 10:22:15 AM 
Started by Sharmin - Last post by aus
Hi everyone,

I am Jia’s mother. In Perth, Western Australia, we have changed from exjade to Jadenu A few months ago. I have a few of exjade pills left. They are mainly 500 g pills. It would be ashamed to throw them out. Is anyone still taking exjade? Can I send them to someone.

Regards

Hooi
hooi@nw.com.au
61 402910884

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