Did U Know That

  • 101 Replies
  • 118794 Views
*

Offline Narendra

  • ****
  • 461
  • Gender: Male
Re: Did U Know That
« Reply #30 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)

Re: Did U Know That
« Reply #31 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

*

Offline nice friend

  • Thalassemia Major
  • *
  • 2834
  • Gender: Male
  • If I Can, Why Not You??... If I Can U TOO !!!...
Re: Did U Know That
« Reply #32 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.
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

*

Offline §ãJ¡Ð ساجد

  • Beta Thal Major
  • *****
  • 1991
  • Gender: Male
  • اَسّلامُ علیکم Peace be Upon you
    • Islamic Resources
Re: Did U Know That
« Reply #33 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.
اَسّلامُ علیکم Peace be Upon you
§ãJ¡Ð ®âµƒ
Web Site

*

Offline sarah

  • *
  • 15
  • Gender: Female
Re: Did U Know That
« Reply #34 on: November 14, 2008, 07:11:54 PM »
when the going gets tough the tough gets going

Re: Did U Know That
« Reply #35 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
« Last Edit: December 28, 2008, 09:38:59 PM by diskjockey »

Re: Did U Know That
« Reply #36 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

*

Offline Andy Battaglia

  • *****
  • 8738
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Did U Know That
« Reply #37 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?
Andy

All we are saying is give thals a chance.

*

Offline Narendra

  • ****
  • 461
  • Gender: Male
Re: Did U Know That
« Reply #38 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.
« Last Edit: January 22, 2009, 11:14:55 PM by Narendra »

*

Offline Andy Battaglia

  • *****
  • 8738
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Did U Know That
« Reply #39 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.
Andy

All we are saying is give thals a chance.

*

Offline Sharmin

  • *****
  • 4155
  • Gender: Female
  • Little A
Re: Did U Know That
« Reply #40 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. 


Sharmin

*

Offline Zaini

  • *****
  • 3448
  • Gender: Female
  • Life is too short to be perfect.
Re: Did U Know That
« Reply #41 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.
^*^Xaini^*^

*

Offline Sharmin

  • *****
  • 4155
  • Gender: Female
  • Little A
Re: Did U Know That
« Reply #42 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
Sharmin

*

Offline Zaini

  • *****
  • 3448
  • Gender: Female
  • Life is too short to be perfect.
Re: Did U Know That
« Reply #43 on: January 23, 2009, 03:48:05 AM »
That's amazing  :sigh I am speech less.

Zaini.
^*^Xaini^*^

*

Offline Narendra

  • ****
  • 461
  • Gender: Male
Re: Did U Know That
« Reply #44 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.

 

SMF spam blocked by CleanTalk