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Thalassemia Patients and Friends and thalpal © A. Battaglia 2019





55209 Posts in 5890 Topics by 6179 Members
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This is Thalassemia Patients and Friends,
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Lisa Cammilleri.
(1970-2004)
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Author Topic: Did U Know That  (Read 96194 times)
Narendra
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« on: May 15, 2008, 12:57:57 PM »

Members,

I see a wealth of knowledge from the members on this forum. I think sometimes it is good and sometimes it is difficult to understand it indepth. So, I was thinking may be a 1 liner (One Sentence) Info on something related to Thalassemia would teach us something new. As it is a 1 sentence, it would be easy to remember

An important point is to have reference to this Did U Know That, so that it is NOT what I think but what we have read and mostly confirmed!!

I go first:-

Did You Know That:-
Thalassemia patients can become parents

Reference:- http://www.annalsnyas.org/cgi/content/abstract/1054/1/300
Quote
Over the last 15 years, 22 women with thalassemia major have completed 29 pregnancies at the Royal Hospital in London

Who goes next?
« Last Edit: May 19, 2008, 05:23:38 PM by Narendra » Logged
Andy Battaglia
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« Reply #1 on: May 15, 2008, 02:33:39 PM »

Great idea, Narendra.

Most thal majors are extremely deficient in Vitamin E. We all know about folic acid, but the same stresses that demand high amounts of folate also demand vitamin E supplementation.

http://www.atypon-link.com/WDG/doi/abs/10.1515/CCLM.2006.219?cookieSet=1&journalCode=cclm

Quote
levels of plasma vitamins A, E and C were all shown to be drastically reduced as compared to the disease-free controls ...Taken together, our data indicate that excessive lipid peroxidation and a profound depletion of plasma vitamin A, E and C levels exist in patients with β-thalassemic major. These data suggest that antioxidant supplementation to the patients for the purpose of alleviating the oxidative stress may be warranted.

Vitamin E helps prevent the peroxidation of the walls of the red blood cells. This is very important because it affects the ability of cells to function...which is to carry oxygen throughout the body. Use only natural vitamin E with d-tocopherols. dl-tocopherols are synthetic and may be harmful is high doses. In addition, vitamin E should be taken as mixed tocopherols as this is how it exists in nature and is much more effective when the whole complex is taken. I have asked Sharmin to talk to Dr Vichinsky about vitamin C in thals because thals are usually very deficient in C also, but all the literature says to avoid C.
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Andy

All we are saying is give thals a chance.
Manal
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mother of thal intermedia child


« Reply #2 on: May 15, 2008, 09:23:59 PM »

Narendra, fantastic.......but i think that this shouldn't be a post because by time it will be hard to find. What about making it a section of the site under the name ''did you know...'' as you have mentioned , Any way

Did you know that it is now proven that L-carnitine reduce apoptosis and prolong the life of the red blood cell in thal major and intermedia patients

For explaination,check this link

http://www.thalassemiapatientsandfriends.com/index.php?topic=892.0;highlight=l-carnitine

manal
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sydneygirl
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« Reply #3 on: May 16, 2008, 06:21:42 AM »

Good suggestion!
my contribuation is-Did you know that- when having blood (a transfusion) i was told by a nurse not to cross your legs as its not very good! i forgot why i think she said clots or something but i forgot,but just dont cross them.
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Zaini
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« Reply #4 on: May 16, 2008, 01:41:48 PM »

Quote
Use only natural vitamin E with d-tocopherols. dl-tocopherols are synthetic and may be harmful is high doses.

Hi Andy,

How would you know if vitamin E meds you are taking are synthetic or not? my doc prescribed me evion for two months.

from http://www.merck.com.pk/line_bus/vit&minerals/Evion_brief.htm

Quote
Evion contains alpha locopherol acetate (Vitamin-E acetate) which has strong antioxidant properties.


This explains anything?

ZAINI.

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^*^Xaini^*^
Andy Battaglia
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« Reply #5 on: May 16, 2008, 07:41:00 PM »

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)
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Andy

All we are saying is give thals a chance.
maha
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« Reply #6 on: May 17, 2008, 02:53:50 AM »

Did you know that the shelf life of RH -ve blood is one week more than that of RH +ve blood. Of course considering the rare nature of the RH -ve blood group something is added to increase its shelf life.
Once Hassan was transfused with blood a week away from expiry, that means the blood was already 35days old 
Maha
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nice friend
Thalassemia Major
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If I Can, Why Not You??... If I Can U TOO !!!...


« Reply #7 on: May 17, 2008, 08:03:23 AM »

Hi all :
i thought that i must have to contribute in it  ... soo :

Did you know that ?...
My doctor told me that it willl much better for thalasemics to take not more than 15 days  old blood bcoze it llast long .
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Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair
Zaini
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« Reply #8 on: May 18, 2008, 06:03:55 AM »

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)


  It's very hard to keep your eyes on everything all the time,especially when you have a thal kid who is your first priorty,and it's not like there are so many choices available.

ZAINI.
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If I Can, Why Not You??... If I Can U TOO !!!...


« Reply #9 on: May 18, 2008, 06:33:01 AM »

Yes it is .....
but wat we all can do is ..  .......... Try our Best .. Hoping for Good .... and keep looking for the best .........
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Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair
Zaini
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« Reply #10 on: May 18, 2008, 06:55:02 AM »

Thanx Umair

For your kind words.

ZAINI.
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^*^Xaini^*^
Kathy11
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« Reply #11 on: May 18, 2008, 07:17:57 PM »

Did you know that we need to be gratefull that we have  negatives to appreciate Positives  in our life .

life is a mix bag full of ups and down lets embrace all, with no exception.
Kathy
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« Reply #12 on: May 18, 2008, 11:22:23 PM »





If life takes you down; Hit back! HARDER!
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اَسّلامُ علیکم Peace be Upon you
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rhea
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« Reply #13 on: May 19, 2008, 12:30:43 AM »

Hi all, 

Did u know that I have never met a bunch of braver, nicer and most caring people in the world. 

Have read most of your mails keep the faith and praying for a cure for our common desease.
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Canadian_Family
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« Reply #14 on: May 19, 2008, 03:55:16 PM »

I visited the site after sometime and this is great idea. I thought for one second and that is what came to my mind.

"Thalassemia is a manageable condition and with proper care, the patients can live normal and prolong life."

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Regards.
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