Thalassemia Patients and Friends
Discussion Forums => General Chatter => Topic started by: Andy Battaglia on October 08, 2008, 10:46:56 AM
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I just want to check in and give a short report on the first day of he conference. The previous issue has been resolved and we are attending what we want/need to see. One thing I will be stressing even more, if possible, is the role of antioxidants in combating the damaging effects of iron in the cells. Studies have shown there is no doubt at all that antioxidants play a big role in maintaining the health of thalassemics. Vitamin E should be taken in a dosage of at least 600 IU daily. 1000 IU is a safe and effective dose for thals. I will be taking more about this in the future. Do not underestimate what you can do for yourself by taking safe, natural supplements.
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Hi Andy ,
Thanx buddy for the F.I.R ( First Instalment of Report ) :grin :grin ...... :ty :thankyou
i hope that you will get more usefull information for us all ... thanx again buddy .
you're doing alot for us .. take care of your self as well buddy .... wish that you have a good time theree ...
Best Regards
Take Care
Umair
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Andy,
Thank you for the report. I'm also glad that you are having access to the information you require. Is sounds like a good day at the conference. That is wonderful news, to know that they are stressing the use of vitamin supplements - because as you have said - this is
something we can do for ourselves. I am looking forward to hearing what else you learn!
Thank you,
Sharmin
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So relieved to know you are there and getting the latest information for the members.
Regards.
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Things opened up so everyone can go where they wish. I wondered how they would police the chaos and it proved impossible. Ironically, one book available at the conference is a book produced by TIF, solely about patient rights. I didn't realize that the patient rights I take for granted are not to be found in some countries. This has to change. Patients need to be aware that they do have a right to be informed and to decide for themselves, every aspect of their care. Nothing less can be accepted.
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Wow,1000 I.U of vitamin E for thals of any age?
Zaini.
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Zaini,
I would suggest 400-500 IU vitamin E daily for a child.
And I want to say hi to Roanna, whose mom I met on day two. She is working at the Iron Warriors booth, which is sponsored by Apo Pharma, the makers of Ferriprox (L1). She is a lovely woman and we had a really nice talk.
Day two was an incredibly productive day for me on several fronts and I think that we finally have some solid answers for our member, Asyam, who I was able to connect to two of the best doctors on earth. I'm doing a lot of hustling to make things happen here, and it is really paying off.
Back to bed. LOL. Woke up to go to the bathroom and you know me...I can't stay away from this group. :biggrin
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Wishing you guys another good day at the conference!!
Sharmin
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good job andy
i hope u can get all the anweres
we need ....
good luck buddy
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Thanks a lot Andy :hugfriend
I am happy that you are happy with the way the things are going on :) . I started Vitamin E for my daughter ,400 I.U daily.
Zaini.
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Hi thalpals in Singapore,
Hope you are having continued success gaining information at the conference. Andy, has anything been mentioned with regards to mixed chimerism and bone marrow transplants at the conference?
Sharmin
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@Zaini
Can u please tell me the brand name of vitamin e supplement you are giving, as i was looking for them and only found one named Ephynal which is 100 mg USP which sure is not enough for me. Thanks
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Hi Andy,
thanks a lot, really sorry that I missed out on the conference as well. Good to know that you managed to meet my mom.
Hope that all is going well in Singapore.
Roanna
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Hi Tariq,
I am giving my daughter "Tokosvit",each capsule contains 400 I.U of Vitamin E,i also use it myself,before that i was using evion,but then Andy informed me about the difference in synthetic and natural vitamin E formulas and i noticed that Evion is not natural Vitamin E supplement,so i changed it.Apparently,synthetic vitamin E is not as useful as natural one.
Hope it helps.
Zaini.
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Thanks Zaini, really appreciate it. i will look for these capsules first thing tomorrow
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Not only is synthetic vitamin E much less efficient, but it shouldn't be taken in high doses. When taking more than 100 IU of E daily, it needs to be natural E. My doctor now warns against using synthetic E in high doses.
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And for those who keep asking "when do I sleep?" the answer is never.
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Hold down the fort as I leave for home today and will not be available for the next 30 hours.
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Have a safe trip Andy!
I just got home a few hours ago from my trip.
Sharmin
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Have a safe trip Andy. I just got home from singapore this morning too and my feet are still swollen after 13 hours on bus..I am still recovering from the trip and came to have a quick check on this site.
I had an excellent time there meeting friends from this site and seeing you guys in real life makes it even better. It is sad when the time comes for us to go on out separate ways back home. Miss you all :wah
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It means for 30 hours we are a ship with out our captain :rotfl Hurry back home captain,we are trying to sail as smoothly as possible :biggrin.
Zaini.
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Thank you for your tireless efforts Nur, I think our members gained a lot from this conference!
Aye aye captain Andy, we are eager to have you back on board!!
Sharmin
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Hi everyone,
I am back and as you may see, I jumped right back into posting. I will make my reports as I have time, but as always, important issues like helping Tariq will always take precedence. I feel the conference had some weaknesses, but to be fair, if you work, you get rewards. I worked very hard at the conference and and was rewarded in many ways, from arranging desferal exchanges (YAY!) to making contacts with many patients, parents and company people. I also got to know some of the doctors better and was quite pleased to see that Dr Piga remembered me from Dubai. I think Dr Wood did also, and I was quite honored to meet Dr Marwaha. The more people I know, the more people I can help. :biggrin
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One thing that has come up as a result of meeting Bob Ficarra who is past president of TIF and CAF, and on the boards of both, is he asked me to join the Cooley's Anemia Foundation. He pointed out that it would in no way affect the independence I enjoy in this group, but it could also work to advance my efforts.
I would like to ask what our members think about this. I have always had great respect for CAF and Lisa's mom has run the local branch for many years. What do people think? Can it benefit us and are there any pitfalls of which I should be aware. Especially if you have experience in thal associations, what do you think? If I do join, it could lead to me being more involved with the orgs. Is this good or bad? Please be frank and honest if you think there are negatives involved. I do feel that there may be some benefit to joining, especially in terms of enhancing the legitimacy of our group, which should result in us helping even more people.
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Andy,
I don't know much about thal associations,but i don't think any thing bad will come out of you joining CAF,it's just that you'll have to devote more and more time,and you are already doing a lot for this group.
If at any stage you feel like it's compromising the independence of this group,you can always leave CAF,can't you?
Zaini.
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Hi all, i came back yesterday.. but was quite tired that dint have a chance to check what was going on in the site until now.. Andy is right, the conference had it weaknesses, but it depended on how you worked around those... so for me it was quite informative and beneficial... I made lots of contacts with so many thals from many countries, and also made contacts with doctors and was able to clarify everything i needed.. (thank you Andy, for helping me find the doctors i needed). There was one time the regulations and rules abt not letting us enter was so frustrating (on day three) that i was close to tears of anger. However, by talking (with Kymn and some other organisers,) i was able to get in for all the sessions i wanted. So, thank you Kymn, for making it happen..
I loved meeting Andy, shilpa and simran again... manal, puja, mariam, nur, miaki (am i missing anyone?) for the first time.. it was so great to see u all. Btw, i had such a lovely time with Andy, shilpa and simran on the last night of the conference. Thanks guys:D … I wish I had met many more of you guys there,… hopefully, next time
I hope to share with you all what i learnt and will also post pictures as soon as possible.. this may take sometime, coz im in full swing into my studies which are close to the finals for this sem :S
To answer your question Andy, I think its good to think about it really well before making a decision. Like you said, it has many advantages, one of it being legitimacy to this group.. However, please be careful of beurocracies which might not allow you to do things freely as you are doing it now. Joining some association shoudnt mean that anyone can tell you how and when and to whom you can, lets say for example, send desferal. Or that you have to get someone else's approval first, to do things WE or OUR GROUP think is right. Another experience i had with associations sometimes (not only thal, but any) is that people who are opinioned and tries to get things moving and changing for the better are silenced by allowing them a place in thier associations that they cannot refuse with lots of benefits (strings attached most of the times... )... so do be careful and think about all this before you decide something.
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I wish i had some extra time to post after i came back but my new work is pulling me away from this site :wah Thinking back, this event was good in terms of meeting people rather than the informations that was gained. I my own occasion, this is a good place to help others too. :biggrin
Andy,
My worries if you join CAF is that you might not have enough time for this site and Coolies anemia is only affected to a certain group of people only (forgive me if i'm wrong). Thal in the other hand is a lot more common and i think concertrating in this site can help a lot more people.
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Yes Nur, CAF is a US organization and we are international here in our group. In fact, Bob Ficarra was surprised the people he knows had never mentioned me and I told him that we are international with a heavy emphasis on Asia (not to exclude anyone). If this was anyone else, I would say no harm in joining, but being that it is me, who never seems to know how to say no to people who need help, I do have to be careful with my decision because it might get me so involved with yet another task.
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Andy i think joining the CAF won't harm especially that they can sponsor your visits to conferences and as Zaini said you can leave anytime if things did not turn to be good
manal
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Andy,
I agree. Since this is your passion and you have the potential to truly make a difference you should consider the opportunities presented to you in Singapore. You are already working so hard, it would be great if you are given more resources through these groups to do what you do.
I have never seen anything stop you from doing what you truly believe in, I don't think that your role in these groups will be able to stop you. You can also let them know ahead of time what additional priorities you currently have, and that you are not going to compromise on them. The only thing you need to consider is how much more you can take on, if this opportunity is meaningful and special to you we will all do what we can to help and support you.
Sharmin
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Andy,
It is a nice thing to help in any way you can, but in my oppinion it would be really beneficial if you could take part in an international association like TIF. In national organisations, things go on smoothly, especially in Europe and the USA, while internationally people need help and guidance. I believe that federations like TIF are useful when they operate internationally helping in far off regions. That is my experience as 10 years ago I was a member of the TIF Board of Directors.
Of course one should be ready to meet unpleasant tactics,if one participates in any association.You see, the truth is you will have to deal with people and people might get unpleasant even if they act for a good cause.
Good luck.
lena
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hi guys n gals
Wanted to ask you what is the brand of natural vitamin I should look for. Cos I was giving Evion, but i guess natural is better.
Zaini - is this Tokosovit international brand. Can i find it in India.
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Puja,
The information on the box says its by Health Aid LTD U.K.Their website is www.healthaid.co.uk
It's imported and marketed in Pakistan by Nutraworld Pvt Ltd.Their website is www.nutraworld.com.pk . When i checked Health aid site,there is not supplement by the name of Tokosvit but they do have Vitamin E tabs,and they claim they are natural.May be when imported,the Nutra World changed the name.
Nutritional information:
Each capsule contains d-alphatocopheryl acetate 268 mg equivalent of 400 I.U of natural vitamin E in a base of edible vegetable oil.
Hope that helps.
Zaini.
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lol, it does help Zaini
I was just asking my mum to chk in india, she said y dont u search on the net. I joked with her mum if i research anymore I will become a doctor on thalassemia.
ANyways I will check and see. Cos Evion also says the same stuff and still it is not natural.
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Hi Zaini,
How do you know whether the vitimin E is syntetic or natural one i'm using an American brand Kirkland??? is that good?
Thanx for the info..........
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I have never known of any doctor that prescribed good quality vitamins. They prescribe what the drug companies tell them about and usually the vitamins manufactured by giant pharm companies are poor quality. The fact that Merck doesn't tell you if it's d-tocopherol or dl-tocopherol (synthetic) is of some concern. It is also not a tocopherol complex. The label should look something like this.
Vitamin E 400 IU 1,333%
(as d-Alpha Tocopherol plus d-Beta, d-Gamma,
d-Delta Tocopherols)
Like Andy said,dl is synthetic,and d is natural.and i remember that evion said dl-alpha.
Thanks a lot Andy,
For so much information and support,right now i am taking evion for vitamin E,but it says dl alpha which i remember you once told is not natural vitamin E,I'll try to search one which is natural.
ZAINI.
Andy,Please correct me if i am wrong.i hope i am not misguiding everyone. :(
Zaini.
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From http://www.chiro.org/nutrition/FULL/Natural_vs_Synthetic_Vitamin_E.shtml
Natural vs. Synthetic Vitamin E
From The November 2001 Issue of Nutrition Science News
by Jack Challem
There is little difference between the natural and synthetic forms of most vitamins. But with vitamin E, natural is better.
On a supplement label, natural vitamin E is listed as d-alpha tocopherol, d-alpha tocopheryl acetate, or d-alpha tocopheryl succinate. In contrast, synthetic forms of vitamin E are labeled with a dl- prefix.
Alpha-tocopherol is the most biologically active form of vitamin E, and its natural form consists of one isomer. In contrast, synthetic alpha-tocopherol contains eight different isomers, of which only one (about 12 percent of the synthetic molecule) is identical to natural vitamin E. The other seven isomers range in potency from 21 percent to 90 percent of natural d-alpha-tocopherol.
This may appear to be arcane nutritional chemistry, but it is key to understanding how the body absorbs natural and synthetic supplements differently. Molecular structure determines how the body uses vitamin E. Researchers have found that natural vitamin E assimilates far better than synthetic versions. Specific binding and transport proteins produced in the liver select the natural d-alpha form of vitamin E and largely ignore all other forms.
In one experiment, Japanese researchers alternately gave natural and synthetic vitamin E to seven healthy young women. It took 300 mg synthetic vitamin E to equal the blood levels achieved by a 100-mg dose of natural vitamin E.[ 1 ]
In other studies at East Tennessee State University, Johnson City, researchers gave a variety of subjects either 30 mg/day or 300 mg/day vitamin E. Each supplement contained half-natural and half-synthetic vitamin E. Both forms were chemically labeled to distinguish one from other vitamin sources.
In blood levels, natural vitamin E increased twice as much as the synthetic form in healthy subjects and pregnant women. In umbilical cords, natural vitamin E levels were three times higher than synthetic vitamin levels.
Blood, however, is not vitamin E's final destination. So in the same study, researchers tracked short-term tissue assimilation of natural and synthetic vitamin E in study participants prior to elective surgery. Tissue takes longer than blood to absorb nutrients, but after seven to 23 days of supplementation, natural vitamin E levels rose higher than synthetic levels.[ 2 ]
Researchers conducted long-term tissue assimilation studies on two cancer patients. One patient took 30 mg/day half natural, half synthetic vitamin E for one year, and the other took 300 mg/day for almost two years. In both patients, blood and tissue levels of natural vitamin E rose twice as high as the synthetic.[ 3 ]
Researchers at Oregon State University, Corvallis, found the human body excretes synthetic vitamin E three times faster than the natural form.[ 4 ]
Although the international unit (IU) standard for vitamin E was meant to equalize the differences between natural and synthetic vitamin E, studies show otherwise. Last year, the National Academy of Sciences recognized natural vitamin E as the standard by which to judge synthetics. Natural vitamin E contains the molecule humans assimilate most effectively.
Jack Challem, known as the The Nutrition Reporter™, has been writing about vitamin research for 25 years and is the author of Syndrome X: The Complete Nutritional Program to Prevent and Reverse Insulin Resistance (Wiley, 2000).
Zaini.
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Lena,
I agree completely about the problem with organizations and the unpleasant tactics that arise and this is one big reason I have not become involved in any organization. By staying independent, I don't have to ask permission and get approval before doing things like sending needles to patients. I also have no time for the endless meetings and discussions that tend to replace real work. I believe in doing, not talking about doing and this is a big difference.
If I am to join any organization, I have to also remain independent, because to me, the important thing is helping people and not getting bogged down with unrelated issues. Since I live in the US, it was suggested I first join CAF, and actually I would feel more comfortable joining CAF first because I feel it is an org that does more to help individuals than TIF does. TIF also has a big problem with losing sight of what is important as they have their inner battles to deal with. This could change in the future but I am not one who would do that. I just cannot put myself into a position where much of my time is taken by meetings and arguments.
My main reason for joining CAF would be to improve my contacts, but realistically, the org people are not really the most informed when it comes to keeping up on medical advances and general health, so the value might be limited in terms of what I can get out of it. However, being part of an org might help me get the ear of doctors and researchers more easily, so this might be a positive. No matter what, I don't want to lose sight of the things that make our group so unique and so useful.
Lena, I would be very happy if you can give me more advice either in posts or pms.
Thank you so much.
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Andy,
I feel you should join CAF. You will get to know the right people and the contacts you will make will be invauable to Thalpal members as well.
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Just wana mention that I'M REALLY THANKFULL for your efforts Andy really god bless you
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Hi Andy ,
i m realy thankful for your efforts buddy .
You are a
(http://d.yimg.com/us.yimg.com/p/afp/20080921/capt.cps.nqt96.210908165016.photo00.photo.default-512x334.jpg?x=400&y=261&q=85&sig=wjBl.fwTOYAJ1BR3YO1DUQ--)
(its The biggest Diamond)
yeah ! you got right, you are the biggest Gem & prescious gift for thals ...
Best Regards
Take Care
Umair