Thalassemia beta

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Thalassemia beta
« on: September 06, 2012, 02:53:45 PM »
Dear All,
I am a new member in this forum.
Actually My niece is detected with beta Thalassemia .she is 21 months old . In general her Hb  lies between 8 to 8.5  but last time when she was sick her Hb reached to 6.5 and then 5.5. we are advised to change blood in every month and gives some medicine hydra and forvite. Right now Thalassemia is in intermediate state and it may change into Thalassemia Major or  in Thalassemia Minor. And doctor told that Born Marrow Transplant is the only option.
she is treating by the doctor of PGI (Lucknow).
Will you please help me to find out a better hospital for her treatment and with good doctor.
Is there any other way except BMW transplant.

HELP ME..Please


Thank You
Manoj Sahu

7259324792

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Offline Narendra

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Re: Thalassemia beta
« Reply #1 on: September 06, 2012, 04:19:33 PM »
Welcome to thalpal,

From what you have posted, your niece is Thalassemia Intermedia and her Hemoglobin levels, spleen size need to be monitored. If the HB levels go too low, she would need transfusion.

It is also important to know the mutations as it will help in treating it, so if you could ask for getting her mutations tested it would be great.

Hydroxyurea or Butyrate therapy might be helpful in increasing the hemoglobin.

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Offline Andy Battaglia

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Re: Thalassemia beta
« Reply #2 on: September 07, 2012, 01:50:50 AM »
Hello Manoj,

Your bio says you are in Bangalore. Is Manipal hospital a possibility?

I would not suggest transfusion if her Hb level is normally above 8, unless she is showing slow physical development or ill health.
Andy

All we are saying is give thals a chance.

 

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