Thalassemia Patients and Friends

Discussion Forums => General Chatter => Topic started by: Narendra on May 15, 2008, 05:57:57 PM

Title: Did U Know That
Post by: Narendra on May 15, 2008, 05:57:57 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?
Title: Re: Did U Know That...Most Thal Majors Are Severely Deficient In Vitamin E?
Post by: Andy Battaglia on May 15, 2008, 07:33:39 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.
Title: Re: Did U Know That
Post by: Manal on May 16, 2008, 02:23:59 AM
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
Title: Re: Did U Know That
Post by: sydneygirl on May 16, 2008, 11:21:42 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.
Title: Re: Did U Know That
Post by: Zaini on May 16, 2008, 06:41:48 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.

Title: Re: Did U Know That
Post by: Andy Battaglia on May 17, 2008, 12:41:00 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)
Title: Re: Did U Know That
Post by: maha on May 17, 2008, 07:53:50 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  :wah
Maha
Title: Re: Did U Know That
Post by: nice friend on May 17, 2008, 01:03:23 PM
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 .
Title: Re: Did U Know That
Post by: Zaini on May 18, 2008, 11:03:55 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)


 :sigh 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.
Title: Re: Did U Know That
Post by: nice friend on May 18, 2008, 11:33:01 AM
Yes it is .....
but wat we all can do is ..  .......... Try our Best .. Hoping for Good .... and keep looking for the best .........
Title: Re: Did U Know That
Post by: Zaini on May 18, 2008, 11:55:02 AM
Thanx Umair :)

For your kind words.

ZAINI.
Title: Re: Did U Know That
Post by: Kathy11 on May 19, 2008, 12:17:57 AM
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
Title: Re: Did U Know That
Post by: §ãJ¡Ð ساجد on May 19, 2008, 04:22:23 AM
:exactly :agree

:letsgo

If life takes you down; Hit back! HARDER!
Title: Re: Did U Know That
Post by: rhea on May 19, 2008, 05:30:43 AM
Hi all, 

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

Have read most of your mails keep the faith and praying for a cure for our common desease. :pray
Title: Re: Did U Know That
Post by: Canadian_Family on May 19, 2008, 08:55:16 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."

Title: Re: Did U Know That
Post by: Narendra on May 29, 2008, 04:01:17 AM
Did You Know That - In a human body, out of the 23 pair of chromosomes, Beta thalassemia is caused by mutations on chromosome number 11

From:- http://www.thalassemia.com/beta_thal.html
Title: Re: Did U Know That
Post by: Danielle on May 29, 2008, 07:33:44 AM
What about making it a section of the site under the name ''did you know...'' as you have mentioned

I really like this idea, Manal.   :happyyes

And Narendra, I really like the overall idea that you gave in the first place.   :hugfriend
Title: Re: Did U Know That
Post by: §ãJ¡Ð ساجد on May 29, 2008, 07:41:25 AM
:hmm

The "Basics of Thal." seems to be a nice place for it. The existing sub-board "What is Thalassemia and How is it Treated?" looks pretty lonely all by itself. :biggrin
Title: Re: Did U Know That
Post by: Narendra on June 06, 2008, 03:02:54 PM
Did You Know That:- Prognosis Of Thalassemia Major has changed drastically due to the use of Iron Chelator's which removes the excess iron. Patients can grow and develop normally, with relatively normal heart and liver functions. This is in contrast with the early 70s and 80s when thals were said to have a short life span. So, now if any doctor's says that your child might live only in their teens, contrast them with the updated data.

From:- http://www.thalassemia.ca/viewarticle.asp?aID=31&searchQ=F.A.Q
Title: Re: Did U Know That
Post by: Canadian_Family on June 06, 2008, 05:16:28 PM
The sub board "What is Thalassemia and How it is treated" is more comprehensive and presents the picture in one shot. The reader does not have to wander around to piece together the information to solve the puzzle.

The efficacy of the sub board is evident by the fact that it is read 4834 times (Re. Beta Thalassemia Major, Intermedia and Minor) and 593 times (Re. Thalassemia).

Narendar,

You are right, I still envy the first doctor we met in 2004 who gave us really grim picture of thalassemia. My wife resigned from a lucrative job as knee jerk reaction because of the stupidity of that doctor. She was never able to got the same paid job untill now.
Title: Re: Did U Know That
Post by: Andy Battaglia on June 07, 2008, 06:52:40 PM
Not to pat myself on the back, but I do agree that our site has the best explanation of thal that you will find on the net and done in a way to give parents a true picture of the current state of treatment for thalassemia and hope for the future.

I have also now begun working on the explanation of alpha thal. Hopefully, it will soon be completed..
Title: Re: Did U Know That
Post by: §ãJ¡Ð ساجد on June 08, 2008, 04:09:27 AM
:agree :yes :clapcheerboy

You are doing great!
Title: Re: Did U Know That
Post by: Danielle on June 14, 2008, 05:21:12 AM
I agree.  You are doing an excellent job, Andy. :thumbs
Title: Re: Did U Know That
Post by: nice friend on June 29, 2008, 09:39:57 PM
Did You Know That :

Hypoglycaemia is the more Dangrous condition than the Hyperglycaemia....

Hypo]glycaemia :
                    Abnormally low blood sugar usually resulting from excessive insulin or
                    not   maintained diet ( low food intake than the needs of body ).

Hyperglycaemia :
                    Abnormally high blood sugar usually associated with diabetes ..
Title: Re: Did U Know That
Post by: cherieann on June 30, 2008, 04:45:34 AM
Hey Nice friend you cheated :rotfl I thought we were doing Thal? :wink

Okay I'll do an easy one...

Did you know that....

The Beta & Alpha tells us which protein is affected in the haemoglobin  :idea
Title: Re: Did U Know That
Post by: nice friend on June 30, 2008, 01:52:16 PM
hi cherian :
sorry but i thought that many thals face the problem of diabeties .. so i thought giive a knowledge base lesson to those thals who r suffering to diabeties ... so that they can live managed and quality life what is one of the mission of this site " GIVE THaLs A CHANCE TO LIVE GOOD LIFE " ...SOO

thanx for correction but i think it is usefull for the thals ...
Title: Re: Did U Know That
Post by: Andy Battaglia on June 30, 2008, 02:26:29 PM
Did you know that an iron overloaded pancreas cannot function properly and that the result is often diabetes among thalassemics, which can be very difficult to regulate resulting in wild swings of blood sugar levels?


(I hope this successfully ties this in as an issue of interest to thalassemics).
Title: Re: Did U Know That
Post by: cherieann on July 01, 2008, 08:38:57 AM
Thank you to both nice friend & Andy.

To nice friend I was only being cheeky. :hugfriend

Do you have any info on other Thalassaemia related diagnosis? or iron overload?

and can you start with..

Did you know.....

and I promise to stop being cheeky. :rotfl
Title: Re: Did U Know That
Post by: nice friend on July 01, 2008, 01:06:33 PM
hi cheriean :
No prob .....

i got something to share ..

Did You Know That ......

With T2*, a bigger score means there is LESS iron in your
heart. With R2, a bigger score means there is MORE iron in
your liver.
Title: Re: Did U Know That
Post by: cherieann on July 02, 2008, 05:48:00 AM
Now I'm scared :wah to see my results.  :scared

Just kidding. Now maybe I can understand my lab results better. :biggrin

Did you know......

That most patients with a major form of thalassemia receive red blood cell transfusions every two to three weeks, amounting to as much as 52 pints of blood a year

 :medicine :coffeestat :coffee :medicine :coffeestat :coffee :medicine :coffeestat :coffee


Title: Re: Did U Know That
Post by: Narendra on July 18, 2008, 04:29:08 AM
Did You Know That:Because it is a genetic trait and not a health condition, except for extremely rare cases, thalassemia trait has no symptoms.

From:- http://www.thalassemia.org/sections.php?sec=1&tab=8&sub=27#2

This means anyone can be a Thal (minor) and not know about it. I think it would be a good idea to get tested for thal(minor) if they haven't got tested (especially if they are from risk communities)
Title: Re: Did U Know That
Post by: jilesh babla on August 22, 2008, 02:45:26 AM
Hey narendra, you are very right a thal minor may go undetected for life. the same case was in me, during my wife's pregnancy, doctors felt i could not be a carrier - conisdering my built and sports history, my wife's was a known thal minor but i was totally unaware of thalassemia and the result was drastic - our first born son a thal major

jhb
Title: Re: Did U Know That
Post by: nice friend on September 08, 2008, 10:25:28 AM
hummm .. As many doctors are keen to prescibe Zinc to their patients. .. i feel that we have to  sahre the benefits of zinc as well ... to remove the hesitation to adding zinc suplements in our medicines ....

Quote
DID YOU KNOW THAT ?...
Zinc has traditionally been linked to cellular growth and repair, with impacts seen in vision, taste and smell, and supporting the immune system. This mineral element is also present in dozens of enzymes that are essential to digestion and metabolism. Manufactured with the Biotron process of amino acid chelation, which ensures maximum absorption and mineral usage throughout the body. A special base encourages slow, sustained release of zinc over a prolonged period.
Title: Re: Did U Know That
Post by: §ãJ¡Ð ساجد on September 08, 2008, 10:38:01 AM
Zinc is necessary for most Thals on Deferiprox when the serum zinc becomes too low; as it chelates zinc along iron. Otherwise if you have a balanced diet and your level is fine then there is nothing to get concerned about.
Title: Re: Did U Know That
Post by: sarah on November 14, 2008, 07:11:54 PM
when the going gets tough the tough gets going
Title: Re: Did U Know That
Post by: diskjockey on December 27, 2008, 06:56:38 PM
do you know that in pakistan a 13 year old boy would soon establish call centre from where you can get all the information regarding thallesamia if you dont  than you would soon
Title: Re: Did U Know That
Post by: mother of little on December 28, 2008, 04:59:36 PM
hi iam new in ur society i am mother of little now a days my daughter ferritin level is high she is using exjad since 7months still i did not get any result i dont know what is the problem can advise me regarding this mater is it necesary to use aluminium glass  while taking exjad
Title: Re: Did U Know That
Post by: Andy Battaglia on December 28, 2008, 06:01:11 PM
Hi mother of little,

(Do you have any connection with another member from Saudi Arabia named father of little?)

Aluminum should be avoided with Exjade, because Exjade reacts with aluminum and it the aluminum neutralizes the Exjade, making it useless. For this reason, you also need to avoid any antacids that contain aluminum. Do not mix Exjade in any metal container or with any metal implement. Use plastic spoons to mix.

What is your daughter's weight and what dose of Exjade is she taking daily and for how long has she been on that dose?
Title: Re: Did U Know That
Post by: Narendra on January 22, 2009, 10:52:05 PM
Did You Know That:-
The loss of function of three alpha-globin genes is called hemoglobin H disease.

People with hemoglobin H disease have a variable phenotype that can range from mild symptoms to those similar to thalassemia major.
Title: Re: Did U Know That
Post by: Andy Battaglia on January 22, 2009, 10:58:29 PM
If all 4 alpha genes are deleted it is called hydrops fetalis and is nomally fatal by birth, as no hemoglobin can be produced. However, I would like to mention that I met someone on Facebook this week who is an alpha thal major and survived because she was born 3 months premature and was transfused. She is now in her 20's with a ferritin of well under 1000 and doing well. The premature birth undoubtedly saved her life.
Title: Re: Did U Know That
Post by: Sharmin on January 23, 2009, 12:52:36 AM
I have a similar story, we know a family who has been dealing with hydrops fetalis.  They miscarried several times - after that they tested early in the pregnancy and began transfusing the baby before birth (in the mom's womb!).  The boy is now the same age as Little A, he is a very normal and happy boy - he and Little A often play Wii together at the hospital during transfusion. 


Title: Re: Did U Know That
Post by: Zaini on January 23, 2009, 03:13:35 AM
I have a similar story, we know a family who has been dealing with hydrops fetalis.  They miscarried several times - after that they tested early in the pregnancy and began transfusing the baby before birth (in the mom's womb!).  The boy is now the same age as Little A, he is a very normal and happy boy - he and Little A often play Wii together at the hospital during transfusion. 




Wow! How can you transfuse a baby in the womb? By transfusing mom?

Zaini.
Title: Re: Did U Know That
Post by: Sharmin on January 23, 2009, 03:27:54 AM
Hi Zaini,

I was surprised as well, especially considering he was born 10 years ago.  I assume that they transfused him through the umbilical cord. 

Can you imagine, they went to such lengths to have a child knowing that he would be transfusion dependent once he was born.  His care now is the same as a beta thal major.  He looks and acts the same as Little A or any other thal major.  The parents feel that it is very worth it for them to have their beautiful son.  This gives a whole other perspective to what we are going through doesn't it - considering they chose to live the life we are living over not having a child. 

Sharmin
Title: Re: Did U Know That
Post by: Zaini on January 23, 2009, 03:48:05 AM
That's amazing  :sigh I am speech less.

Zaini.
Title: Re: Did U Know That
Post by: Narendra on February 02, 2009, 07:04:47 PM
From:- http://smj.sma.org.sg/3402/3402a1.pdf

Did U Know That:-
Thal receiving transfusions should use Leukocyte Filters as the filters help in preventing transfusion reactions like fevers.
Title: Re: Did U Know That
Post by: poo gill on February 16, 2009, 10:57:06 AM
Did you know that:

Synthetic Vitamin E is more expensive than Natural Vitamin E. The price difference is not much but it is there.

 I am not sure how is this possible but it is?
 

Title: Re: Did U Know That
Post by: Zaini on February 16, 2009, 11:09:28 AM
And did you know that:

Natural Vitamin E is utilized by your body twice as efficiently as the synthetic vitamin E,it gets absorb in your body more easily.

Puja,

Its a bit strange,because here synthetic Vitamin E supplement is way cheaper then the natural one  :dunno.

Zaini.
Title: Re: Did U Know That
Post by: nice friend on February 16, 2009, 12:34:16 PM
 Did you kow That :
[bgcolor=#ffffff]Seven percent of a humans body weight is made up of blood. [/bgcolor]

Take Carez
Umair
Title: Re: Did U Know That
Post by: Dori on February 16, 2009, 04:27:02 PM
And,

I know that I got more blood than normal (can that be the same for thals?) so here it is more than 7% !!!
What about water?
Title: Re: Did U Know That
Post by: poo gill on February 17, 2009, 08:18:53 AM
Zaini

This price difference I noticed in India. I was also surprised and I asked thechemist, he didnot know the reason.

Title: Re: Did U Know That
Post by: poo gill on February 24, 2009, 05:22:39 AM

1. Law of Self-Recovery:
In general, the body is capable of healing itself at a certain rate. If a person has a wound or burn, the body will heal itself and recover within a few days to a week. In other words, even if you do not apply antibiotic on the wound or burn, the body will repair or heal itself. At the present moment, there is no medicine available for the treatment of viral infection. But even if a person has cough or cold due to viral infection, the body will recover generally in one or two weeks without medication.

Title: Re: Did U Know That
Post by: Dori on February 24, 2009, 09:20:04 AM
I heard this, but there was no source who said it was true though.

Zinc and Manganese can be interfered with by high iron making many iron overload patients deficient Means that we can have shortage of zinc and manganese?
Title: Re: Did U Know That
Post by: Narendra on March 04, 2009, 09:33:22 PM
Most of the members know this but for some curious guests and some newcomers, this might be useful.....

Did You Know That:- 

Vitamin C increases iron excretion by increasing the availability of chelatable iron,

But care should be taken as, if Vitamin C is given in excessive doses it may increase the toxicity of iron. It is recommended not to give more than 2-3 mg/kg/day as supplements, taken at the time of the desferrioxamine (desferal) infusion so that liberated iron in the body is rapidly chelated.

From:- http://www.thalassaemia.org.cy/pdf/Guidelines_2nd_revised_edition_EN.pdf
Title: Re: Did U Know That
Post by: Emby on July 06, 2009, 04:29:11 PM
did you know that one of the major causes of death in thalasseamics is transfusion of wrong blood type.
my son was given wrong blood by mistake but shukr Allah, thank God, he is well. 
please always check and double check your blood before transfusion.
God protect us all. 
Title: Re: Did U Know That
Post by: Andy Battaglia on July 06, 2009, 05:54:51 PM
That is great advice. That almost happened to Lisa once but she caught it before the nurse started the transfusion. Always check the bag and make sure it's the right type and also is labeled for you. I was almost a victim of hospital error (actually I was a victim continuously while I was there) when I was supposed to be taken down for an x-ray and when the orderly brought me up to a desk and said I have the guy here for his biopsy, I freaked. I made so much noise that the worker was reassigned to a job where she wouldn't have to deal with people. I suppose if I had let them go on I would have had a good case for a lawsuit, but it is a lesson to all. Make sure that they have the patient and procedure matched.
Title: Re: Did U Know That
Post by: Emby on July 06, 2009, 06:13:19 PM
ha ha l-o-really-l andy!!......its real scary at the time i know but that sounds like a real comical situation !!

the blood actually was running for a minute or two.  my son was eating at the time and he started coughing and spluttering.....then his face went blank and he shut his eyes.  my hubby realised his blood type was wrong on the unit...i clamped him off.  my son would not have been able to alert the nurse.... but, thank God, he was fine.
Title: Re: Did U Know That
Post by: Sharmin on July 06, 2009, 06:17:42 PM
Emby,

Oh my gosh!  How scary, thank god your little guy is okay.  Thank you for sharing this very important information with us.  When they give blood to my son two nurses have to be present - they have to confirm his name, date of birth, blood type - and then check the blood against his crossmatch band.  If he is not wearing a band the blood is not given.  Each nurse then has to sign that all information was checked before blood is started.  We also check ourselves and have lil A check his own blood to make sure that he is being given O- blood.  One can never be too careful because mistakes still happen - as was the case with your son - and with Andy almost getting a biopsy!

Sharmin
Title: Re: Did U Know That
Post by: nice friend on July 06, 2009, 06:41:49 PM
Hi Emby ,
Thank GOD to hear that everything was finely handled and your son is okiey...  thanx for sharing this important information  :) .....

Best Regards
Take Care
Umair
Title: Re: Did U Know That
Post by: Emby on July 07, 2009, 05:34:04 PM
hiya umair and sharmin,

we have the same procedure since then.
may God protect everyone.

take care. 
Title: Re: Did U Know That
Post by: Emby on July 07, 2009, 07:40:33 PM
did u know that thalassemia cannot be 'contracted'. it is not infectious or contagious.

we know a family with thal major child.....has some close family members who do not want anything to do with them.  they think its bad karma (spelling wrong??) & that they would ''catch'' it if they came in contact.....!!!!???? ???????!!!!........their child is gorrrrrrgeous !
Title: Re: Did U Know That
Post by: Zaini on July 09, 2009, 04:29:29 AM
Such stupid people still exist in this world  full of knowledge,eh?  ??? :mad

Zaini.
Title: Re: Did U Know That
Post by: T @ r ! Q on July 09, 2009, 04:43:17 PM
World is full of knowledge but not everyone has means to access it.
Title: Re: Did U Know That
Post by: Zaini on July 09, 2009, 06:21:13 PM
I doubt it someone living in UK wouldn't have means to access it ( if thats the case),or they might be just ignorant,not trying to know what actually thal is.
Title: Re: Did U Know That
Post by: Emby on July 09, 2009, 08:05:49 PM
not bothering to know..... :(
Title: Re: Did U Know That
Post by: cherieann on July 18, 2009, 12:26:50 AM
Zaini don't let it get you down.
The world is a big place with people who have different views and ideas.
The word is ignorance not stupid. People will accept what suits themselves.
The good news is that for every person who is self absorbed, there is another who does care.
We are fortunate to know and understand about Thal whether it is going good and bad and it is us that inform others about thal. Not everyone will want to know but there will always be someone else who does. Cheer up my mate. We need to accept what we can't change and change what we can.
We are awesome people who will always attract true friends who care about us.
Smile cause I love you. :hugfriend I don't care if people are ignorant, thats their lost not ours.
Title: Re: Did U Know That
Post by: Zaini on July 18, 2009, 06:57:30 PM
Thanks a lot Cherie  :hugfriend this site is the best ,it has given me so many lovely friends and hope and courage,thanks for being there  :hugfriend.

Zaini.
Title: Re: Did U Know That
Post by: cherieann on July 19, 2009, 03:59:41 AM
 :agree :exactly :lovethissite
We are all here for each other.
Title: Re: Did U Know That
Post by: QA on August 13, 2009, 03:33:59 PM
Hi all, this is the first time of mine in this web. I come from Vietnam and am wondering if there is any member from my country. I've read through your sharing and learnt a lot. Thank you very much.
To Andy: am I correct that a thal boy on defexiprox should take vitamin A, E, C and zinc? Can you advice the dose? Tks a lot
Title: Re: Did U Know That
Post by: QA on August 13, 2009, 04:33:50 PM
Could any one tell me where to read more about iron chelating agents? In fact doctor has just switched my boy from Desferal sc to oral deferiprox and I would like to know more about iron chelating med? Tks ...
Title: Re: Did U Know That
Post by: Zaini on August 13, 2009, 06:33:44 PM
Hi QA,

Please read through our section,"iron chelation corner".The med you are talking about i think is defriprone,this drug is best taken in combination with desferal,it also depends on what is your son's iron level,so do tell us more about your little boy :) .

Zaini.
Title: Re: Did U Know That
Post by: Andy Battaglia on August 13, 2009, 06:40:04 PM
The oral version of Ferriprox is rather new and has shown to have far fewer side effects in the digestive system. This has almost elimintaed one reason why patients sometimes could not tolerate Ferriprox. Ferriprox (deferiprone) is the most effective chelator for removing iron from the heart and also offers some cardio protection. The new oral solution has really simplified chelation.
Title: Re: Did U Know That
Post by: QA on August 14, 2009, 03:58:34 PM
Tks Zanni, tks Andy, tks U all... But tks is never enough to say to Lisa... Why haven't I found you all any earlier?
My boy is thal beta/HbE. He receives tranfusion once in about three mths to maintain Hb around 9. He used to get 2 vials of Desferal subcutaneously wkly. However he's frighten of injection. he did not use any Desferal in the last two mths and the ferritin level reached 1500. We brought him to Singapore and a doctor there gave him Deferiprox 500mg, twice daily. He is really happy having that oral med. After 1 mth, the ferritin reduced to 800 and doctor tells us to continue that med with the same dose. I hope being in Singapore with experienced in thal doctor will help my son much more. And being with you here i will learn so much... Thank you :smiley
Poor us that not any doctor in our city  has much experience with thal. We received not any clear treatment plan for my boy, no advice on supplement of vitamin C or anything alse...

I've seen many thal children in the hospitals, they almost come from remote areas and are poor,they are not iron chelated cause of expensive iron chelator...  :(
Title: Re: Did U Know That
Post by: Lena on August 14, 2009, 04:07:14 PM
That is why this site is so helpful:

It gives people a chance to survive!

It breaks my heart to know there are thals who cannot "rule thal", as Andy puts it...

Lena.
Title: Re: Did U Know That
Post by: QA on August 14, 2009, 04:08:07 PM
Sorry Zaini, I did not write your name correctly. But it does mean you are a so good friend of mine now...
Title: Re: Did U Know That
Post by: Zaini on August 14, 2009, 06:09:46 PM
QA,

Its ok,you don't have to apologize for such small mistakes :) i hope your boy will be healthy and happy and his ferritin will go even more lower,i am glad you found a good doctor :)

Zaini.
Title: Re: Did U Know That
Post by: jade on October 08, 2009, 12:36:28 PM
Hi there

1kg pine bark contains 2000 mg antioxidants.  I was watching a t.v. program yesterday and they showed how a lady who was suffering from low bp and frequent fainting took this pine bark infusion and she got better. It is supposed to regularise blood pressure (both low and high) and boost energy.  It is used in China.  Anyone uses this?

Jade
Title: Re: Did U Know That
Post by: Manal on October 19, 2009, 05:18:18 AM
At least 15 million blood units are needed every year to keep alive 500,000 patients with beta-thalassaemia major

http://www.thalassaemia.org.cy/did_you_know.html

manal

Title: Re: Did U Know That
Post by: Narendra on August 16, 2010, 09:58:44 PM
Did You Know That : Thalassemia is the most common, inherited single gene disorder in the world.

Source : http://thalassemia.com
Title: Re: Did U Know That
Post by: Kishore on August 12, 2011, 03:23:16 PM
DID YOU KNOW THAT ?
IF I COULD  KNOW ABOUT MY THAL EARLIER
I WOULD IOVE MY LIFE MORE BETTER.
Title: Re: Did U Know That
Post by: Andy Battaglia on April 24, 2012, 11:54:36 PM
Did you know that vitamin C restores the antioxidant properties of vitamin E once the vitamin E has already been used once as an antioxidant by the body? We definitely need more research into vitamin C and thalassemia.
Title: Re: Did U Know That
Post by: Andy Battaglia on April 26, 2012, 09:28:08 PM
Did you know that thalpal is also on Facebook? https://www.facebook.com/groups/78504283219/
Title: Re: Did U Know That
Post by: Pratik on April 27, 2012, 10:09:19 AM
Hi mother of little,

(Do you have any connection with another member from Saudi Arabia named father of little?)

Aluminum should be avoided with Exjade, because Exjade reacts with aluminum and it the aluminum neutralizes the Exjade, making it useless. For this reason, you also need to avoid any antacids that contain aluminum. Do not mix Exjade in any metal container or with any metal implement. Use plastic spoons to mix.

What is your daughter's weight and what dose of Exjade is she taking daily and for how long has she been on that dose?
Hi Andy, I would like to seek an advice from you regarding your post of this.

My father gives me EXJADE daily at 7 in the morning in Aluminium (metal) glass as we only use those glasses for normal use only.

Does that makes a big difference? Really?

-Pratik.
Title: Re: Did U Know That
Post by: Andy Battaglia on April 27, 2012, 01:51:07 PM
I would suggest not using a metal container to mix Exjade. There is too much exposure to the surface of the container. Using a metal spoon is considered acceptable but I would advise against a metal container because we don't know how much reaction between the chelator and the metal.
Title: Re: Did U Know That
Post by: Pratik on April 27, 2012, 02:08:56 PM
Hi Andy,

Thanks for your advice.

Is glass container or plastic container (both) are good for it?

Thanks for the tip, I shall change it from tomorrow.
Title: Re: Did U Know That
Post by: Dharmesh on July 08, 2012, 06:25:56 PM
Hi Andy, I would like to seek an advice from you regarding your post of this.

My father gives me EXJADE daily at 7 in the morning in Aluminium (metal) glass as we only use those glasses for normal use only.

Does that makes a big difference? Really?

-Pratik.
What is Aluminium containing antacid?
Title: Re: Did U Know That
Post by: Dharmesh on July 08, 2012, 06:31:55 PM
Did you know that vitamin C restores the antioxidant properties of vitamin E once the vitamin E has already been used once as an antioxidant by the body? We definitely need more research into vitamin C and thalassemia.
It means Vitamin C is used by the body instead of Vitamin E when Vitamin E get utilised by the body?
Is it something like Sodium and Potassium inter changeble properties?
Title: Re: Did U Know That
Post by: Andy Battaglia on July 08, 2012, 06:43:32 PM
No. It means that once vitamin E is used as an antioxidant, a chemical change occurs. Vitamin C restores vitamin E to the same status as before it was used, so it can be used again as an antioxidant. The two work together.
Title: Re: Did U Know That
Post by: Andy Battaglia on July 08, 2012, 06:44:43 PM
Some antacids contain aluminum. These should be avoided by Exjade users (and by everyone in general, because aluminum is a toxic metal).
Title: Re: Did U Know That
Post by: Dharmesh on July 08, 2012, 06:49:49 PM
Did You Know That :

Hypoglycaemia is the more Dangrous condition than the Hyperglycaemia....

Hypo]glycaemia :
                    Abnormally low blood sugar usually resulting from excessive insulin or
                    not   maintained diet ( low food intake than the needs of body ).

Hyperglycaemia :
                    Abnormally high blood sugar usually associated with diabetes ..

HAVE FACED TWICE HYPOGLYCEMIA. IT IS MORE DANGEROUS FOR PATIENT AND PAINFUL FOR PARENTS TO CURE IT QUICKLY( AS PATIENT IS SUB CONSCIOUS)
SO, JUST TRY TO MANAGE SLIGHT ELEVATED LEVEL OF BLOOD SUGAR. AND KEEP FAMILY RELAX.
DHARMESH
Title: Re: Did U Know That
Post by: Dharmesh on July 08, 2012, 06:56:19 PM
when the going gets tough the tough gets going
Hi Sarah,
I like this quote much.
My coaching classes use it as slogan.
Truly said, When going gets tough the tough(Inner strength) gets going.
Dharmesh.
Title: Re: Did U Know That
Post by: Dharmesh on July 08, 2012, 07:05:25 PM
Some antacids contain aluminum. These should be avoided by Exjade users (and by everyone in general, because aluminum is a toxic metal).
But what exactly antacid means? something related to acidity tablet?
Title: Re: Did U Know That
Post by: Andy Battaglia on July 08, 2012, 07:07:18 PM
A simple medicine to prevent stomach acidity. Rolaids and Tums are examples in the US.
Title: Re: Did U Know That
Post by: Pratik on July 09, 2012, 06:07:39 AM
Andy, is there a problem taking those Antacid sometime? I take acidity tablets now-a-days due to high acidity induced (and turns out the heart burn/pain is related to acidity and not actually heart pain) in my body.

To name the brand, I take Aciloc (tablet) manufactured by Cadila (Zydus).
Title: Re: Did U Know That
Post by: Andy Battaglia on July 09, 2012, 06:47:07 AM
It is only antacids with aluminum that need to be avoided while using Exjade or Asunra. Aciloc does not contain aluminum.
Title: Re: Did U Know That
Post by: Dharmesh on July 10, 2012, 01:28:31 PM
Hi Andy,

Thanks for your advice.

Is glass container or plastic container (both) are good for it?

Thanks for the tip, I shall change it from tomorrow.
Hi dear all,
I am using glass container and plastic spoon for mixing Asunra.
Dharmesh.
Title: Re: Did U Know That
Post by: Dharmesh on July 10, 2012, 01:33:50 PM
A simple medicine to prevent stomach acidity. Rolaids and Tums are examples in the US.
Hi Andy Bro
 :ty :thankyou :thankyou2 :ty :lovethissite
for such a micro level answer.
Dharmesh.
Title: Re: Did U Know That
Post by: Lokkhi maa on June 21, 2015, 03:17:05 AM

Hello Andy,


I am searching for d-tocopherol vitamin E as per your advice  in Bangladesh for my baby but my searching result is below:


E-Cap Plus

(Tocopherol, α- is reported as an ingredient of E-Cap Plus)

Ec (Tocopherol, α- and Ascorbic Acid)
Orion, Bangladesh

Carv (Tocopherol, α- and Ascorbic Acid)
Delta, Bangladesh

Biovit E

Tocopherol, α- is reported as an ingredient of Biovit E


What does mean by Tocopherol, α-  ???

Please help

Title: Re: Did U Know That
Post by: Andy Battaglia on June 22, 2015, 03:23:53 PM
Tocopherol is vitamin E. Ascorbic acid is vitamin C and only small doses can be taken by thals.
Title: Re: Did U Know That
Post by: Lokkhi maa on June 23, 2015, 03:05:43 AM

Thanks Andy.

Whats the difference between Tocopherol  and d Tocopherol vitamin E.If in Bangladesh d Tocopherol not found then can I give only  Tocopherol as E-Cap Plus (Tocopherol, α- is reported as an ingredient of E-Cap Plus) to my baby...

Will it be helpful for her.....

Best Regards  :smiley
Title: Re: Did U Know That
Post by: Andy Battaglia on June 23, 2015, 02:44:56 PM
D-tocopherol is natural vitamin E
DL-tocopherol is synthetic vitamin E.
All vitamin E is one of the tocopherols.
Title: Re: Did U Know That
Post by: Lokkhi maa on June 24, 2015, 02:14:17 AM

Thank you Andy  :happyyes
Title: Re: Did U Know That
Post by: shababhsiddique on August 02, 2015, 03:42:18 PM
Is there a localization thread? I want to find thal pals who live near me.

I live in Kalabagan, Dhaka, Bangladesh