Hi Everyone

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Offline AL

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  • Aqeel with Aleesya
Hi Everyone
« on: June 11, 2007, 11:59:26 PM »
Let me introduce myself briefly, i am 33 years of age and my wife is 26 years old. I have a son age 8 months and he has been confirmed to have HBe Beta. Frankly speaking i was devastated when i heard this, but later i found out this website which helps a lot in so many ways, well we first found out that my wife was a carrier of HB beta and myself carrying HBe when my wife was pregnant.

Since that day we pray to god that so that the baby would be fine that is 1/4 chances,,,later at the age of seven months we started noticing that his eyes turned yellow, so when we did our check up we found out that he has HBE beta. Now he has been referred to a hospital on 14th Jun 2007,,that is a day after tomorrow.

At first i did not know anything about thalasemia, but now i'm a lerning a lot about it.

Since this something very new to me and we have yet to see the doctor on the 14th,,would appreciate if anyone could help me on anything,,perhaps latest update, information, news, personal experiences  etc.

Would appreciate your kind assistance. Later

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Offline Manal

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  • mother of thal intermedia child
Re: Hi Everyone
« Reply #1 on: June 12, 2007, 01:01:09 AM »
Hi

Welcome to the site :hugfriend

I am so sorry for what you have been passing through, i know this is the toughest part, but by time i guess that things will be better especially when you get to know more information. 

Actually i don't know much about HB E, but i guess we have one or two members who has this kind of mutation. Please read as much as you can so you can get to know everything about this mutation and therefore give your baby the maxium care. Please keep us updated

Good luck
Manal

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Offline Hallu

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  • 70
Re: Hi Everyone
« Reply #2 on: June 12, 2007, 02:21:29 AM »
Hi Al_Shams,
I can feel what you must be going through after determining this condition in your baby. However, don't feel disheartened as your baby can have a normal life...I'm 32 years old and have Beta-Thal with Hb-E and so far, my life and health has been ok ... no complains :) .
I got transfused once when my Haemoglobin dropped quite a bit because of a viral infection but otherwise it's around 8. I do have a pale complexion and some yellowness in eyes, thatz because of the excessive bilrubin that thal's have.
Please don't hesitate to ask any question that you may have, and as Manal suggested please go through different posts on this site ...it'll be very helpful and your understanding on this condition will get much better.

Welcome to the site :)

--Hallu

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Offline Andy Battaglia

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  • Will thal rule you or will you rule thal?
Re: Hi Everyone
« Reply #3 on: June 12, 2007, 04:45:29 AM »
HbE Beta Thalassemia can have symptoms ranging from non-transfusing intermedia to transfusion dependent major. The decision on whether or not to transfuse will be based on what hemoglobin level your child is able to maintain. Hydroxyurea may be an alternative to transfusions. The test results will hopefully make things clearer.
Andy

All we are saying is give thals a chance.

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Offline Lyanne

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Re: Hi Everyone
« Reply #4 on: June 12, 2007, 01:45:23 PM »
 Welcome! Al_Shams! You went to the right place!I know you can learn a lot from this site!
LYANNE :yahoo

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Offline Zaini

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  • Life is too short to be perfect.
Re: Hi Everyone
« Reply #5 on: June 13, 2007, 08:12:00 AM »
Welcome Al Shams,

to this forum,i remember we have quite a few members with hbe beta thal,try the search option,it might help you.wissh you all the luck.

ZAINI.
^*^Xaini^*^

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Offline Danielle

  • Beta Thal Major
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Re: Hi Everyone
« Reply #6 on: July 01, 2007, 11:29:24 PM »
Hi, al_shams! Welcome to the site!  I'm glad that you found us.  I'm sure you will get lots of help here.  We have a very intelligent, loving, and understanding group of people here.  :biggrin

Re: Hi Everyone
« Reply #7 on: July 02, 2007, 02:57:22 AM »
Hi Al-shams,
welcome to the site,im sure you will find answers to your questions & along the way make some fantastic friends & extented family!
Best wishes. :wink

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Offline jzd24

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Re: Hi Everyone
« Reply #8 on: July 09, 2007, 02:15:08 PM »
Welcome! I'm so glad you found this site. I felt like I had experienced a miracle when I found it. There are great people here who can help you. Jean

 

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