Why I Know So Much About Thal Minor

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Offline Andy Battaglia

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Why I Know So Much About Thal Minor
« on: August 26, 2017, 07:27:29 PM »
I constantly get asked how I know so much about thal minor. Well, the answer is right here in this group. You, the members who post are my teachers. Every story of success or failure makes an impression. Every symptom and every remedy comes from you, the people who carry this disorder. Thank you all for your participation. You do wonders for your fellow thals!
Andy

All we are saying is give thals a chance.

Re: Why I Know So Much About Thal Minor
« Reply #1 on: August 26, 2017, 09:15:23 PM »
Thank you Andy for all the work you do on this website, and providing such excellent and compassionate advice.  I have you to thank for a successful first pregnancy. Had I not visited with you about proper supplements my now 6 year old most likely wouldn't be here (Doctor said I was in the process of a miscarriage).  I am now happily expecting my 3rd baby:)

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Offline Andy Battaglia

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Re: Why I Know So Much About Thal Minor
« Reply #2 on: August 26, 2017, 10:24:37 PM »
Stories like this make it all worth the time and effort. The problem of miscarriage in thal minor women is greatly underappreciated by doctors, but I have had so many women share their experiences with me that I know it is actually a much bigger problem than realized. 2-3 miscarriages is common in thal minors-one woman reported 9. Natural vitamin E can do a lot to help prevent this and it is such an easy therapy. I try to spread this information everywhere, so more women can enjoy successful pregnancies. But if not for women reporting it to me, I would have never known it was an issue in thal minors. The members sharing both good and bad teaches us so much.
Andy

All we are saying is give thals a chance.

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Offline dq

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Re: Why I Know So Much About Thal Minor
« Reply #3 on: August 28, 2017, 12:31:09 PM »
The real Thank You goes out to you Andy :)

You may not know it but everyday thousands of thal sufferres visit your site via personal bookmarks, simple google searches and even academic researchers.

Be well buddy.

Re: Why I Know So Much About Thal Minor
« Reply #4 on: October 13, 2017, 12:05:47 PM »
Andy's inputs here and on specific emails have been eyeopeners. The vast experience he carries on thalassemia as a whole is appreciative.
Its quite helpful and keep it up Andy.

Re: Why I Know So Much About Thal Minor
« Reply #5 on: December 21, 2017, 11:41:29 PM »
Dear Andy,

Your initiative, support and knowledge has helped me and my family a lot.  I have had a number of miscarriages over the years and the doctors would not investigate further saying it was all random! I got some closure after reading the comments here about the rate of miscarriage amongst thalassemia carriers.

I only stumbled on this site after I had my daughter who is now nearly 13 and carries an alpha thalassemia trait, like me and is currently iron deficient. But we are working on helping her get iron stores up responsibly and monitoring her iron uptake.  Thanks for the useful information you have provided about iron deficiency and how to diagnose it and treat it in thalassemia carriers.

Even though I did not have much knowledge about thalassemia growing up and as an adult, this amazing resource and community here has helped me educate my daughter about her trait and how to optimise her health; through proper nutrition and balanced exercise.

We took our daughter back to my dad's village in Greece this year (called Agrinio in Central Greece) and found out that it is a hot spot for alpha thalassemia in Greece. This has had to do with the region's physical environment; its lakes, rice fields and yes there was a malaria outbreak there in the past.  All this time I felt like an oddity here in Australia as I did not know any other alpha thalassemia carriers, as Greeks tend to have beta thalassemia. 

Our traits can teach us so much about our ancestry and it was really interesting to meet so many of our relatives who all carry the same trait.

Have a safe Christmas season and a rejuvenating and productive New Year.

Kind Regards
Salty Sea from Australia

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Offline Andy Battaglia

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Re: Why I Know So Much About Thal Minor
« Reply #6 on: December 22, 2017, 12:37:38 AM »
I believe I once read that the occurrence of alpha thal trait was higher than beta trait in Greece.

I also want to show you this link that was posted By Josephine at the Facebook thalsupport group. http://www.military-technologies.net/2017/12/15/colla-corii-asini-treating-anemia-in-pregnant-women-with-thalassemiapresenting-the-syndrome-of-blood-deficiency/

I have never seen admissions like this about the problems thal minors experience during pregnancy. I am already well aware of most of the problems from talking to thal minor women, but never before have I seen these problems listed so thoroughly.

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Recent studies showed that compared with healthy controls, women with thalassemia [this includes all types of thalassemia from silent carrier to major] are associated with a wide range of abnormality and adverse pregnancy outcomes including cardiovascular disease, thrombotic disease, spontaneous miscarriage, premature delivery, oligohydramnios, fetal growth restriction and low birth weight. Currently there is no consensus on treating anemia in pregnant thalassemia patients. Due to the absence of an safe and effective therapeutic measures, many thalassemia patients are prone to develop low level of Hb, which can severely impact the fetal growth and maternal health.
Andy

All we are saying is give thals a chance.

Re: Why I Know So Much About Thal Minor
« Reply #7 on: December 22, 2017, 01:41:57 AM »
Hi Andy,

This is a very interesting study.  Thank you for sharing. It is fascinating that Chinese studies have shown gelatin to increase red blood cell and hemoglobin count as well as increase serum calcium level, increase the absorption and utilization of calcium, and prevent and treat muscle wasting. Many of the older generation in my family would use broth as a tonic frequently; the science is only now starting to catch up with the benefits of many natural and holistic healing foods.

I have introduced broth recently to our diet to help heal my daughter's gut (many of us have 'leaky gut') so that she can absorb nutrients more efficiently including iron, so this information is very helpful and timely. I use organic or biodynamic bones and it is a fairly easy to make.  I actually enjoy the process and add turmeric, ginger and nettle to the broth as well.  I think you are a vegetarian so I hope the idea of bone broth does not 'upset you' but I think there are so many benefits in drinking it and using it in soups etc and it is worth our members to at least consider whether it is suitable for them.

It would be wonderful if more studies could be followed up, especially in relation to broth's potential to increase red blood cell and haemoglobin count.  I will update you on how we go with our mini-experiment. It is summer here in Australia but we are still making broth in our household for Christmas using turkey bones!!

 

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