Thal at teen!

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Offline Roopa

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Thal at teen!
« on: October 03, 2007, 02:50:42 AM »
Dear friends,

Pleasant day to all here...I am so overwhelmed with all your postings, the information, the caring, the love, the support, the togetherness, the spirited exchanges  that it has truly prompted to me to share my concerns with you all...

Many thanks to Andy and Danielle for this platforum....to share...to give..to listen...to take..
very grateful...!

To briefly, introduce myself...I am Roopa from Bangkok, Indian origin leading a great life with a very loving family...however, the bright, red comfort carpet under my feet was taken away..when I gathered that my 15 yr daughter needs blood transfusion every 30 days...She is Beta-Thal-Intermedia...so far, she has had only two...I am dreading here thinking abt whats in store ..the quality of life...medications, treatments etc...She otherwise leads a normal life, school, friends..etc...but lately, we have asked her to cut down on her physical activities, sports in school etc..We are consulting a very good doctor here...She was detected when she was two, but it seems to be taking a toll now when she is growing up...and in her teens now...

Through this forum, I would like to meet, talk, share similar concerns, specifically caring for teens...any information is valuable/important to me at this point of time...needless to say, the comforting words that my daughter would be fine...
Also, would like to know if there is  anyone from Bangkok here...

Look forward...I leave my best wishes, prayers for all those who are going through similar pains and concerns...Liffffffeeeeeeeeeeeeeeeeeeeeeeeeeee!!!

Love..

Roopa

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Offline §ãJ¡Ð ساجد

  • Beta Thal Major
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Re: Thal at teen!
« Reply #1 on: October 03, 2007, 04:44:17 AM »
Hi Roopa,

:welcome to the family!

Your daughter's condition is relatively mild than Thal. Major. However, untreated Intermedia can cause sudden problems when the person is least expecting. It is always good to regularly monitor her Hb; lest it drops too low that requires a blood Tx, even though like most Intermedias she could maintain at a low non transfusion-able level with or without the help of HbF inducers. Furthermore her Serum Ferritin should also be kept in check to see if her body is absorbing too much Iron from the diet.

If everything goes well, she will lead a perfectly healthy life. I'd recommend you have a chat with the Thal. Int. members of this site to share their experience when things got out of hand and what they should have done if they had known earlier to better maintain their condition and avoid the complications. Hopefully that knowledge will prove most important for your daughter.

Please feel free to ask any question that you have in mind.

Wishing you all the best for the future.
اَسّلامُ علیکم Peace be Upon you
§ãJ¡Ð ®âµƒ
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Offline Lyanne

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Re: Thal at teen!
« Reply #2 on: October 03, 2007, 09:28:03 AM »

    Welcome aboard!you have come the right place. Do feel free to ask any questions. Everyone will willingly help you on whatever!Do keep in touch! and take care! :hugfriend
LYANNE :yahoo

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Offline Zaini

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Re: Thal at teen!
« Reply #3 on: October 03, 2007, 07:12:38 PM »
Hello Roopa,

Welcome aboard,rest be assured that you have found a very knowledgeable forum ,i am sorry i don't remember if there are any teenage members here,but i think there would be,or at least moms with teenage kids,but as Sajid told you thal intermedia is much more manageable then thal major, my daughter's case is different bcoz she is a transfusion dependent intermedia,due to her wrong diagnosis in the beginning,anyways who can fight with fate,i am happy that she is growing well ,and ofcourse we have to fight for her chelation,you might wanna look for some hb inducers,keep her ferritin and all blood counts in check,i hope she'll achieve anything she wants for herself.

Wishing her luck and joy,

ZAINI.
^*^Xaini^*^

 

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