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

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nannu:
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

maha:
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

Andy Battaglia:
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.

Sharmin:
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

Miaki:
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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