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what is the life span of thal major patient with regular transfusions and chelat

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Offline nannu

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what is the life span of thal major patient with regular transfusions and chelat
« on: April 14, 2008, 08:56:02 AM »
My daughter anisha is 9mth's old and has been diagnosed a thal major. can some one tell me what is the life expectancy of a thal major patient in todays scienrieo if she contnues to take regular b/t and chelation therapy.
                                    knowledge hungary dad of my cutie pie
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Offline maha

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Re: what is the life span of thal major patient with regular transfusions and chelat
« Reply #1 on: April 14, 2008, 02:35:06 PM »
Hi Nannu
For information sake Andy knows two majors who are in their 50`s, and another site I had visited once had a member who was 70. Dunno if he was a major or intermedia though.But remember Nannu death is not thal specific. Anyone and everyone who is living today has to die someday. Recently in my home town a 11 month old fell in a bucket of water. His parents were away and his grandparents were resting their tired feet. The baby was out of their sight for only 5 mins, but still the child died. The child was not a thalassemiac.He was a normal, healthy child, but still he did not live long enough to see his first b`day. I am not trying to frighten you, just perhaps trying to deviate your attention from death to LIFE. No one knows how long they are going to live, so live today like there is no tomorrow.
take care
Maha
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Offline Andy Battaglia

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Re: what is the life span of thal major patient with regular transfusions and ch
« Reply #2 on: April 14, 2008, 03:23:55 PM »
Well said Maha. No one knows how long their time is on earth and we should be thinking about life and not death.

Currently, majors are living into their 50's and 60's. With new advances in treatment that are expected, the lives of thalassemics will be even longer. The young thal born today should not even be concerned about lifespan, but instead with having a good life. As parents, you should prepare your child for life just as you would prepare any non-thal child. They will both have the same chances for careers and families and should never be denied any opportunity because the have thal.

With compliance to treatment, you can expect your child to outlive you.
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Andy

All we are saying is give thals a chance.
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Offline Sharmin

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Re: what is the life span of thal major patient with regular transfusions and ch
« Reply #3 on: April 14, 2008, 03:29:31 PM »
Dear Nannu,

Provided that your child is properly managed - transfused and chelated - there is every reason to believe that she will live a full life span.  Keep her on a healthy, balanced diet and let her be active.  Many thals, who are healthy today, did not receive the same level of care that children are receiving today - and they are doing well.  Your daughter will do very well.  

Also, many thals who died young either contracted Hepatitis through blood transfusions (in the past when the blood was not properly screen for Hep) or sustaineded iron damage.  With proper management, this does not need to happen today.  In fact, in todays world where children are eating over processed food and lacking proper excercise - if you raise a healthy, active child who is to say she won't outlive others of her generation.  Keep posting and reading on this site - as she grows make sure to give her supplements - according to the proper guidelines and she will surprise you!  

Also, note that there are many potentials for a cure in the next decade or so - at least easier and better management are on the horizon which will greatly increase quality of life as well as life span.  The future is bright for children with thalassemia - as long as we manage them well!  

Please see the following sites:
http://www.genetixpharm.com
http://www.errantgene.com/
http://72.51.34.33/HTML/about.html

I wish I had this reassurance when my son was first diagnosed.  I suffered with uncertainty for a long time, wondering if there was any hope.  I now believe that, while things can go wrong, there is much reason to be hopeful.  I'm sure Andy can provide you with a lot more information.

Best of luck to you and your cutie pie!

Sharmin :hugfriend


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Sharmin
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Offline Miaki

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Re: what is the life span of thal major patient with regular transfusions and ch
« Reply #4 on: April 18, 2008, 01:52:48 AM »
One's life span is no negotiable, when your time is up your time is up.

Live your life to the fullest as if each day was your last. Have many good times, some down time but above all BE HAPPY and count our blessings we are here.

Don't worry about what tomorrow brings us, we will only spend that time worrying about something we cant fix. Concentrate on thigns we can do to make ourselfs better or better off.

Miaki x
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Offline nice friend

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Re: what is the life span of thal major patient with regular transfusions and chelat
« Reply #5 on: May 10, 2008, 03:56:24 AM »
hi all :
i want to add some words to these posts :
 
diseas doesn't kill  someone  it could be the reason of the deat but not the coze of the death ..

wat do u say abt the peoples who killed in war , road accident , and the player of Soocer who died when he was playing a match suddenly he layed on the grass  when their doctor and their teamates reached her he was died  ( remember that player of socer age between 23 -27  ) how could he died like this   ... many of u know that soocer is a game of phsicaly & mmentaly perfect peoples like ronaldo , ronaldinho .. that  match was between two english teams ( top rated english teams ) one was manchester united ....... u can find recording of that match easliy  ...docs says that "a soocer player who is pplaying  soocer  is 80% safe than normal man to cholesterole ,heart problems ,diabeties,asthma and bones problems...................

i want to show that diseas  cant kill anyone it is just a  the order of god when ur time is finshed then.................................................  u & i will never more................
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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.
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Umair
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Offline Zaini

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Re: what is the life span of thal major patient with regular transfusions and chelat
« Reply #6 on: May 10, 2008, 06:50:33 AM »
Well said Umair  :thumbs

ZAINI.
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Offline nice friend

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Re: what is the life span of thal major patient with regular transfusions and chelat
« Reply #7 on: May 11, 2008, 07:21:12 AM »
thank you zaini :
i m adding here the words of             ( Shoib mansoor (dir ,producer of khuda kay liay movie)
like he says in after the succesfull launching the movie in pakistan he said in the ceremony  "": es tarah ki kafi sari filmein meray under bani pari hein bus unko bahaar lanay ki zarorat hai "": )           

hahhahahaahahahah  same is happening to me lots of moral lessons stilll inside my heart just want to come outside ...... here i got a chance to keep my friendz moral up one of that lesson came out ....                              zaini and all plz dont mind  i dont know how n why everytime  i want to laughed on the serious topics. laugh on the serious topics of  life  is wat CAPRICORN's  especialty ....              yes my astrology sign is Capricorn ... but i dont believe in astrology and anything like foretelling .        but some qualties mentioned in my Sign i felt that is real but not at all  .........................      thank you           take care of u and ur little fairy     
                                                                              from
                                                                         umair
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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
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Offline nice friend

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Re: what is the life span of thal major patient with regular transfusions and chelat
« Reply #8 on: August 16, 2008, 09:12:33 AM »
Quote
wat do u say abt the peoples who killed in war , road accident , and the player of Soocer who died when he was playing a match suddenly he layed on the grass  when their doctor and their teamates reached her he was died  ( remember that player of socer age between 23 -27  ) how could he died like this   ... many of u know that soocer is a game of phsicaly & mmentaly perfect peoples like ronaldo , ronaldinho .. that  match was between two english teams ( top rated english teams ) one was manchester united ....... u can find recording of that match easliy  ...docs says that "a soocer player who is pplaying  soocer  is 80% safe than normal man to cholesterole ,heart problems ,diabeties,asthma and bones problems

hi buddies :
here iss the  proofe of wat i said bafore ...
yes it is the video of the player who die in soccer field ... when he was playing soccer ... he got a yellow carrd .after that he chat to the umpire in happy mood he was laughing but he didn't know that life is laughing on him ...and then suddenly everything changed ..atmosphere of the ground and feelings of crowd and truth of his life welll .... nothing more to say just want to apeal that plz wathc both videos and let me know which one you like most ...... ???... i think both videos are unforgetable and make my eyez tearing ... it is the hard truth of life ......

1)  http://www.youtube.com/watch?v=zKmqdPUs6FQ&feature=related

2)  http://www.youtube.com/watch?v=us1anf6ojeY&feature=related

Best Regards :
Take Care :
Umair
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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
*

Offline Waleed

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Re: what is the life span of thal major patient with regular transfusions and chelat
« Reply #9 on: August 16, 2008, 12:12:02 PM »
Life expectancy depends on :

1. Destiny(Luck) ... that is how far is the chance that a person might die in accident murder calamity or natural heart attack that can happen to any normal person at any time without no reason . So not only thals, even normals are vulnerable to this

2. Fitness of Organs -- the organs brain heart liver etc fitness counts to thals life expectancy. If there hav been good transfusion n chelation then the organs would be in good condition and less chances or heart failure , liver disease and other organs problems. More fit = More life

3. Treatment -- how well u keep urself to get well point no.2 . wel aware about ur body treatment any deficiencies,vitamins  n nutritions exercise and the most important of All CHELATION n transf well before hb 10, 11

If all these points are kep normal without any chances of bad luck ...  Thals life can be prolonged as much as of any normals

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Waleed
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Offline nice friend

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Re: what is the life span of thal major patient with regular transfusions and chelat
« Reply #10 on: August 16, 2008, 12:34:09 PM »
Waleed :
did you wathc the the videos i linked above .....
the person who died in the videos is a footballer ...
no thalassemia
no diabetes
no cholestrole
no iron overload
no Low HB
no vitamin defeciances

just a sudden death .. a sudden call ......
you're right everyone has to take care of his/her self but ...
wat i m saying abt life expectancy  is  , no one can gues how long his life willl b  .. bcoze it is all abt the call ...iits all abt the time .. when the times come up .. everything will b change... and will turn into reason of death ... check this link and concentrate on words he is saying ...

http://www.youtube.com/watch?v=zKmqdPUs6FQ&feature=related
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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
*

Kathy11

Re: what is the life span of thal major patient with regular transfusions and chelat
« Reply #11 on: August 16, 2008, 11:31:37 PM »
Hi nice -friend,
Interesting, video clip it leaves food for thought.
Thank-you for sharing.
Kathy
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Offline nice friend

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Re: what is the life span of thal major patient with regular transfusions and chelat
« Reply #12 on: August 18, 2008, 01:16:55 AM »
@ Kathy
HI Kathy :
thanks for your reply ...
thanks for appreciating the video ....
and a good response ......
take care
umair
--------------------------------------------------------
@ My thoughts
all i want to say is....
you cant cliam that you got a day added in your life bcoze of chelation but u can say that you are living a healthy life bcoze of chelation............chelation is not for long life.... chelation is for healthy life .you will look fair and beutifull and healthy and good growing and safe to other complications of thalassemia ... but no one cliam that bcoze of this medicine i m alive .... life is a gift of god n you me and all have to give him his gift back WHEN THE TIME COME UP. .... thats wat i want to explain....
An urdu poet said : " the great warrior sikander had never thought that he will die before enjoying the Happiness of his victory (sikander died just after a war in which he wounded . in the age of 20 years )" ....

wat do u say ???..........

footballer wasn't a thal .... he wasn't case of iron overload ... he was a good healthy man ....

so you could say that diseases kill the people ... its my view wat i want to raise for thal that dont loose patience , dont b dis-hearted ,, dont need to scare of your diseas .... it is nothing more than a little misfunction of our body ............

well i met to a girl in lahore she was on agressive chelation ... her last ferritin level was 17000 ....
wat can you say how she survive with this much high ferritin levels...

i know the exact average age of a thalasemic .. ( remember i m saying average age, not exact age )
i heard in a health talk show abt  it.. but i won't to share it ... it could demorlise someone ...
« Last Edit: August 18, 2008, 12:03:02 PM by nice friend »
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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
*

Kathy11

Re: what is the life span of thal major patient with regular transfusions and chelat
« Reply #13 on: August 18, 2008, 09:47:18 AM »
Hi Umair.
I dont get it .I didn't say such things or i don't remember I don't have a clue whats going on 

I just stated that the video clip was interesting and makes a person think seriously about life itself.

Also ,I think that its wrong to introduce oneself as a thal.

People sufers from thal, but they are far more than that ,one must not define themself as thal.
that because thal is a condition only one part of ones life.

I would argue    that  telling people about thal  is to be left at individual discretions,when or how, or if
 The more one talk about thal, the more awareness it brings to everyone.

Kathy
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Offline nice friend

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Re: what is the life span of thal major patient with regular transfusions and chelat
« Reply #14 on: August 18, 2008, 12:07:39 PM »
Hi kathy ;
look at my previous post is that fine now..
i just mixed up my tought and reply ...
in my second last post .... thats y i think it create's confusion .... now look again and plz tell me that it is fine now .??? or still have to change something ... if you want to see any changes in my that post then copy that post and send it to me with correction u wana see in it ... send it in P.M  ...waiting for your reply.. Thank you UMAIR
« Last Edit: August 18, 2008, 12:34:01 PM by nice friend »
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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
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