Thalassemia Patients and Friends

Discussion Forums => Thalassemia Major => Topic started by: Alia on December 08, 2006, 08:15:44 PM

Title: Daughter with thallassemia major
Post by: Alia on December 08, 2006, 08:15:44 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
Title: Re: Daughter with thallassemia major
Post by: Andy Battaglia on December 08, 2006, 08:19:50 PM: Hi Alia and Welcome to our group,

What country are you in and which iron chelator is being recommended for your daughter?
Title: Re: Daughter with thallassemia major
Post by: Alia on December 08, 2006, 08:25:36 PM: I live in newzealand im not sure what medication it is but she is going to started soon.thanks for your reply
alia
Title: Re: Daughter with thallassemia major
Post by: Christine Mary on December 08, 2006, 09:01:01 PM: Welcome Alia!!! :hithere

I'm fairly new at all of this, with my little one having Thal major as well.

Please know that whatever questions or concerns you might have, you've come to the right place to get the BEST advice!

:flowers
Title: Re: Daughter with thallassemia major
Post by: Kathy11 on December 08, 2006, 11:07:22 PM: Hello Alia :wave :wave.

I hope that our forum help in aleviating your worries regarding your daughters health problem,and provides support for you when in need I promise you, that is one of the best move you have made ,this is a fantastic site ,welcome and good luck.
Kathy
Title: Re: Daughter with thallassemia major
Post by: KHALIFA on December 08, 2006, 11:49:11 PM: hallo Alia
all what i can say is

WELCOME TO YOUR SECOND FAMILLY

KHALIFA
STATE OF KUWAIT

ONE FOR ALL AND ALL FOR ONE
Title: Re: Daughter with thallassemia major
Post by: Manal on December 09, 2006, 01:22:18 AM: Dear Alia :smile2

Welcome to the site :flowers. As all our friends said above , you will learn alot. Please feel free to ask anything anytime. I advice you to read our posts first to get an idea about the whole thing.

Take care :wave

Manal
Title: Re: Daughter with thallassemia major
Post by: Andy Battaglia on December 09, 2006, 02:49:27 AM: Hi Alia,

You're right about New Zealand. There's only about 5 or 6 thal majors there so they are not very familiar with it. However, I do know one of the families there who have an 11 year old son who is a major. They're originally from Romania. The father is a member of our group and his young daughter is named after Lisa, who started this group. :smileblue
Title: Re: Daughter with thallassemia major
Post by: §ãJ¡Ð ساجد on December 09, 2006, 06:43:28 AM: Hello Alia!

Welcome to the site!

You will find people of all ages relating to Thalassemia on this site from every corner of the world. I am a 25 yrs old Thal. Major patient from Pakistan and I recommend you read through the topics of your interest and make sure to check the topics that have been pushed to the other pages because of newer ones on the first one.

I hope that you will get to know everyone very well here soon and hopefully find the answers to all your questions and please feel free to ask us anything that you have in mind and do share your story with us.

Take care, Peace!
Title: Re: Daughter with thallassemia major
Post by: riya on December 09, 2006, 08:38:54 AM: Hi Alia! :hug
Welcome to our group! I am Riya (a thal major)from India.In India also a few ppl and doctors know all about thal.But bieng a part of this forum helped me a lot in understanding what I need and how can I take care of myself.So feel free to ask anything.

RIYA
Title: Re: Daughter with thallassemia major
Post by: Alia on December 09, 2006, 09:23:09 AM: Thank you so much for all your replies.Thank you Andy for your information.i really want to keep an contect with this person you have mention.I really feel for all the people incluoding my daughter who got this condition.
Alia
Title: Re: Daughter with thallassemia major
Post by: kabir_love on December 09, 2006, 09:43:36 AM: HI THERE,
Dont get diappointed my son is 8 months and docotr confirm me also a thal major, anyway like you said ur daughter had gone throung first tranfusion. u must take care of few things that doctors must use fliter while transfusion and there is this medican coming up which will replace the pump use to take out iron excess from the body, well with this medican atelast much of the part in life that cauz pain is out.

rest i m goin throungh a treatment here some researcher had devepold so i hope with that he can stabel the hb of the body so after that even blood transfusion is not necessary. i hope for the best and rest ill keep u inform ..

takecare.
Title: Re: Daughter with thallassemia major
Post by: Danielle on January 08, 2007, 03:51:44 PM: Hello, Alia! :hithere

I'm a Thal Major, and have been receiving blood transfusions since I was 9 months old. I go every two weeks for two units of blood, and my hemoglobin is kept at around 10. I just turned 30 years old. :biggrin

Right now, I am using both Desferal subcutaneously, and the new oral chelator Exjade. It was difficult using the pump when I was a child, because everything seems much worse when you are a child. I didn't understand why I was chosen to have Thal, and became angry at the world. I changed my whole outlook as I got older, and now I just do what I have to do. Sometimes I get a little sad about it, but I just keep moving on, and telling myself that there is nothing I can do. I want to live, and accomplish things in life, so I must do whatever it takes to stay healthy. Things can definitely be worse. I'm grateful that I'm able to walk, hear, see, have all my limbs, and can live a fairly normal life. :)

I totally understand how difficult it is to find a good doctor who knows a lot about Thalassemia. Unfortunately, there aren't an abundance of them. I hope you find a knowledgeable one for your daughter, and that she continues to stay healthy throughout her life. Good luck to you. We are always here when you need us. :hug
Title: Re: Daughter with thallassemia major
Post by: lily on January 09, 2007, 12:50:55 AM: HI ALIA,

I FEEL ALOT LIKE DANIELLE, I HAVE AN 18YR OLD SON WITH THAL MAJOR. HE HAS HAD MANY COMPLICATIONS THRUOUGHT HIS YOUNG LIFE, HOWEVER IM EXTREMELY GRATEFUL THAT HE IS ABLE TO WALK, TALK, HEAR, RUN DO MOSTLY EVERYTHING OTHER KIDS HIS AGE ARE ABLE TO DO.

HAVING A SICK CHILD IS NOT EASY BY ANY MEANS, AS A PARENT YOU FIND YOURSELF BLAMING YOURSELF AND ASKING WHY HIM AND NOT YOU, THESE ARE ALL NORMAL THINGS THAT AS PARENTS WE ALL GO THRU.

WHEN MY SON WAS BORN THERE WAS VERY LITTLE TO KNOW ABOUT THALLASEMIA, NOT VERY COMMON PLUS NO INTERNET TO LOOK UP INFORMATION. ALL THAT HAS CHANGED THERE ARE MANY ADVANCES IN THAL FROM THE RELEASE OF EXJAD WHICH ALL OF US THAT HAVE BEEN DEALING WITH THAL FOR MANY YEARS KNOW JUST WHAT A BLESSING EXJADE IS FOR OUR THAL PATIENTS. BONE MARROW TRANSPLANTS ON OUR PATIENTS ARE NOW MUCH MORE SUCCSESFULL. WITH ALL OF THESE NEW ADVANCES YOUR CHILD IS SURE TO HAVE AN ALMOST NORMAL LIFE.
THIS FORUM HAS A LOT OF INFORMATION AND GREAT ADVICE FROM PATIENTS ASWELL AS FROM US PARENTS. WE HAVE ALL BEEN THRU MANY CHALLENGES AND ARE HERE TO HELP ONE ANOTHER.
FIND A GOOD HEMATOLOGIST THAT YOU CAN TRUST AND FEEL COMFORTABLE WITH AND ASK QUESTIONS AND IF YOU DONT UNDERSTAND WHAT THEYRE SAYING ASK AGAIN, SOME DOCTORS HAVE A TENDENCY TO TALK AT PATIENTS NOT TO THEM, AS A PARENT IT IS YOUR RESPONSABILITY TO STAY ON TOP OF THINGS AND QUESTION YOUR DOCTORS, DONT FEEL INTEMIDATED, YOU TELL THEM IF YOU DONT UNDERSTAND SOMETHING AND MAKE THEM EXPLAIN IT TO YOU. IT TOOK ME A LONG TIME WHEN MY CHILD WAS YOUNG TO SPEAK UP AND ASK QUESTIONS WITHOUT FEELING LIKE I WAS DUMB OR SOMETHING. DOCTORS ARE PEOPLE WITH KNOWLEDGE AND IT IS THEIR RESPONSIBILITY TO EXPLAIN THINGS TO US IN A WAY THAT WE CAN UNDERSTAND SO THAT WE CAN TAKE BETTER CARE OF OUR SICK CHILDREN.

WELCOME TO THIS WONDERFUL SITE, TAKE CARE
AND GOODLUCK.
LILY
Title: Re: Daughter with thallassemia major
Post by: Christine Mary on January 11, 2007, 12:58:28 AM: Hi Lily,

Having thal doesn't classify one as sick? Does it? :dunno

I like to look at it like this:

They just need a bit more "maintanance" and special care,thats all. I think being sick is something one catches.

Thal is a condition and a gene "disorder".
I always read on here that society needs to treat thals as equals. How can we treat them fairly, if we consider them sick? :nurse

Thats the way I see things. Hopefully I will follow this belief when I have to face the triumphs that thal brings.
I dunno,maybe I'm kidding myself? :quiver
Love,
Christine
Title: Re: Daughter with thallassemia major
Post by: roldan par 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!!!
Title: Re: Daughter with thallassemia major
Post by: Zaini 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
Title: Re: Daughter with thallassemia major
Post by: fairytale on April 14, 2007, 09:43:27 PM: Quote from: Alia on December 08, 2006, 08:15:44 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.
Title: Re: Daughter with thallassemia major
Post by: Miaki 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