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Hi everyone!

We are the parents of a 16 month old girl with a hemoglobin H disease.  My husband and I found out that our little angel has this kind of disease just before christmas last year.  When the doctor told us about our child's illness, we spent time researching on it.  That is how we found this wonderful site.  Not only do we get useful informations on the site, but by  reading all the messages made us realize that there are actually people out there who cares.  And this gave us strength and hope.

Our child is on a folic acid medication right now to maintain her current hemoglobin level.  Her hematologist told us that her hemoglobin level will not come up to the normal level but she just want to maintain our child's current hemoglobin level or better if it goes up by giving our child the folic acid.   

I hope to share with you and learn more about this disease.


-Jon and Tet

hi tj,
      so welcome to this wonderful site but u did not state the exacct problem of this condition where as i can make out i think its not a case of thalassaemia majorbut may be a thal trait or a minor whereas he is also having iron deficiency cos my elder daughter is a thal major whereas my son who is younger is a thal minor n has an iron deficiency
           this is a wonderful site hope u get all ur queries answered
   

  hey, welcome to our wonderfull family!!!

well i'd like to ask you which hemoglobin H disease??

Hi Gaurav,

Simply speaking, it is a type of Alpha Thalassemia which involves 3 out of 4 gene mutation.

Hi Jon and Tet!

to the family!

I hope your baby does well. Just keep an eye on her blood counts and Serum Ferritin occationally as she might tend to absorb more iron from food if her Hb. gets on the lower side.

Hello Jon and Tet,


  Do share with us more and more,what exactly is your daughter's current hb level.

ZAINI.

Hi Jon and Tet,

 

Where are you guys from?

Please share more about your daughter's Hb , her growth and development and how you cope with her condition. I am a mother of 18 month old daughter who is Thal Major. It is always nice to learn from experience of other moms...

hi tj,
      so welcome to this wonderful site but u did not state the exacct problem of this condition where as i can make out i think its not a case of thalassaemia majorbut may be a thal trait or a minor whereas he is also having iron deficiency cos my elder daughter is a thal major whereas my son who is younger is a thal minor n has an iron deficiency
           this is a wonderful site hope u get all ur queries answered
   

hi!
her doctor told us that it is considered as thal major since 3alpha globin out of 4 are missing.

Hi tj , I,m father of nanu my 7 month old daughter who has thal.major. Welcome to the site since it  not only gives you latest about this disease but also give mental toughness to face it with brave face.Best of luck

Hi everyone!

We are the parents of a 16 month old girl with a hemoglobin H disease.  My husband and I found out that our little angel has this kind of disease just before christmas last year.  When the doctor told us about our child's illness, we spent time researching on it.  That is how we found this wonderful site.  Not only do we get useful informations on the site, but by  reading all the messages made us realize that there are actually people out there who cares.  And this gave us strength and hope.

Our child is on a folic acid medication right now to maintain her current hemoglobin level.  Her hematologist told us that her hemoglobin level will not come up to the normal level but she just want to maintain our child's current hemoglobin level or better if it goes up by giving our child the folic acid.   

I hope to share with you and learn more about this disease.


-Jon and Tet

thank you all for the warm welcome.

Hi Gaurav,

Simply speaking, it is a type of Alpha Thalassemia which involves 3 out of 4 gene mutation.

yes you are right

Hello Jon and Tet,


  Do share with us more and more,what exactly is your daughter's current hb level.

ZAINI.

hi,
her hb level is now 10.3

Hi Jon and Tet,

 

Where are you guys from?

Please share more about your daughter's Hb , her growth and development and how you cope with her condition. I am a mother of 18 month old daughter who is Thal Major. It is always nice to learn from experience of other moms...

Hi Hope,

We are from the Philippines.  Although my baby is considered as Thal major according to her doctor, she doesn't need any blood transfusion as of the moment.  We also hope and pray that there will never come a time that she will be needing it. 

I will share more about my baby with you on the next days...

Hi Nannu,

to the family!

You have beautiful kids

Hi tj,

I think that for someone with condition like thal major,it's pretty good hb.keep it up.

ZAINI.