Daughter with thallassemia major

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Offline roldan par

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Re: Daughter with thallassemia major
« Reply #15 on: March 27, 2007, 08:48:19 AM »
hello...
I just want to say that being a thalassemia patient requires a lot of trust in God and a lot of care and effort co'z it's a long journey to battle..a battle she cannot face alone but she can if she's not alone.
You know I'm also a beta Thalassemia major patient since I was born 23yrs. ago.
Here in the Philippines most of us were not that lucky to have the financiall capabilities to support the needs of the patient..
I'm also a type1 diabetes now due to lack of chelation therapy i need to attain every day, I was diagnosed with other associated diseased last june because of iron overload..
I hope I inspire you with my story, if I God gave me the blessing of being still alive today what more to those who are more blessed in life?
Just continue your support to your daughter and always pray to God..
More power and Godbless!!!
hmmm...judge me when we get to know each other

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Offline Zaini

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Re: Daughter with thallassemia major
« Reply #16 on: March 27, 2007, 11:51:23 AM »
Hello Alia, :urwelcome

let me tell u that u hv chosen a right place,, this site is very informative and believe me  seeing all the thal ppl chatting here joyously gives me strength,as i m a mother of a thal major , my daughter is six years old,and she is doing very fine,, ALHAMDULILLAH,,and ur daughter will be alright,, u know we are so lucky we are in an age of modern and advanced science,they are doing researches on this disease,,,there are now medicines by which transfusion can be delayed,,less transfusions,less iron,less problems :stars there is a hospital here in karachi,pakistan,,,who are givings these drugs to there patients and according to them they have quite a result.anyways life is much easier and much painless for thals now a days,,otherwise i hv seen my cousin,,, who died of thal abt 20 years ago at the age of 20,,, but that was past,, present is quite pleasent,,, and future will bring a complete cure INSHALLAH  :yeahthat  ok so if u hv any questions u can post them here,, if u want to contact me personally ,,feel free,, my email is listed there in my profile,,,take good care of ur daughter and ur self.


TATA. :goodluck
^*^Xaini^*^

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Offline fairytale

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Re: Daughter with thallassemia major
« Reply #17 on: April 14, 2007, 09:43:27 PM »
hi every one,my daughter got thallassimia major.im living in a country where hardly anyone knows about this condition.The docters are not that familier with it eather,she is getting the best possble care but i love to here about other people who have this condition as i have very little understanding of this condition.my daughter is now 14 monthes old.   she started her first blood transfusion when she was six months old.i like to know about all diffrent ages of people who got this condiotion and how do they deal with it in everyday life,also how do they deal with the iron medecation they might be recieving.
Alia
hello Alia,
Im 33 and have thal major.  All i have to tell u is that i know its not easy but your daughter will eventually learn to live with it and if she takes good care of herself she will be able to live a normal life and enjoy everything life has to offer her.  I've learned to deal with it and to be honest it never stopped me from doing anything i really wanted to do.  You must treat her like she's like any other child so she doesn't grow up feeling sorry for herself.  Be strong for her.

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Offline Miaki

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Re: Daughter with thallassemia major
« Reply #18 on: April 16, 2007, 02:46:15 PM »
Hello Alia and welcome to our group,

As fairytale just said and other before her, please treat your little angel as you would normally treat any other child. Don't let her grow up thinking that she is sick, she is very much normal and has a blood disorder which requires medical treatment once a month or whatever the case may be.

She will grow up to go to school, bring home friends, go to parties, drive a car, get a job and later if her destiny is to get married and have children she will do that, just like you did and many of us here have. I'm a thal major who is married and has a child who is 12 yrs old. So anything is possible.

As Andy mentioned before there are few patients in New Zealand living with Thal Major, however I know of cesar who Andy also mentioned who's child has thal major and he and his family are just lovely. Als there is a thal clinic there in New Zealand and I know the unit nurse manager. If you would like to get her details please contact me privately. However with the new iron chelation that is available in New Zealand I know that Exjade by Novartis is now available and I believe that they are giving it to patients as young as 2 yrs old if their treating physician will offer it.

Anyway I do wish you luck, keep us posted and if you need any additional information please contact me privately for the nurses details.

Good luck Miaki xx

 

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