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Keep Smiling:
dear my niece najaf zahra has got beta thalassemia
and i dont know at what stage she is
she is 4 years old
plz guide me

Narendra:
Hello and Welcome to thalpal.

The prognosis of thalassemia has changed leaps and bounds and your niece has medical advances on her side. There is nothing that can stop her from growing as a healthy person, if she complies to known treatment for Iron Overload.

Is najaf on transfusion? if she does take transfusion, does she take medicine for chelation (to remove iron from the body)? There are many members today who are in their 40's and 50's living a normal life and there have been many advances for the treatment and cure for thalassemia.

From : http://www.thalassemia.com/prognosis.html


--- Quote ---The life expectancy of children who have used Desferal since a very young age remains to be seen, though researchers and physicians expect to see long, productive lives.

In affluent countries, a child who is born with thalassemia major (either beta thalassemia or alpha thalassemia) will face a lifetime of monthly blood transfusions and nightly infusions of desferoxamine. Over the past several decades with the progress of medical technology,this once universally fatal disease has been converted to a chronic illness.

--- End quote ---

Do ask questions and there are many members who can share their experience with you.

Keep Smiling:
she does not take blood regularly so far in 4 years she has got blood only 3 times once in 6 month age and second time in september 09 and third time in october
she has been very recently diagnosed
doctor is giving her only folic acid
plz help me

Narendra:
If she does not take regular blood transfusion, she seems to be a thal (intermedia) and needs to be properly managed. It seems like her body is making some hemoglobin and you might want to find out ways for her HB to increase (Possibly with the use of Hydroxy urea or similar medication). Talk with the doctor in regards to it.

Do you know what hemoglobin levels is she maintaining? It is important for a growing child to maintain a proper hemoglobin level so that she can grow up normally. Could you tell us where she resides so that we can point you to some good doctor's around (if we know the location).

Also, drinking tea with food with help her reduce Iron Absorption. Iron is absorbed from food and intermedia's run into Iron overload even if they are not transfused regularly.

Narendra:
Another link I just saw would be helpful for your niece.

http://www.cooleysanemia.org/updates/TI3.pdf


--- Quote ---In children with thalassemia intermedia, there are many decisions to be made by the health care team and the family in terms of transfusion. Frequently, your child’s doctor will only give transfusions if the hemoglobin falls below a certain value on several occasions. Other times the team will decide to give chronic transfusion for a certain time period and then re-evaluate. These decisions depend on the well–being of your child and how he or she feels. It is hard to predict in what category your child will fall; therefore, the child will require frequent check-ups with your doctor
--- End quote ---

So, as mentioned earlier the doctor treating her, would need to evaluate her on a regular basis.

Again from the same link above

--- Quote ---Are there treatments that can increase my hemoglobin so that I don’t have to get transfused?
Some experiments with chemotherapy classes of drugs, such as hydroxyurea, have increased the amount of fetal hemoglobin in a patient, possibly increasing the baseline hemoglobin one to two grams or reducing transfusion requirements. Some patients have been prescribed drugs such as Procrit or Aranesp, that stimulate the creation of red blood cells; however, red blood cells created in this manner still contain defective hemoglobin. As a result, the patient simply makes more “defective” red blood cells, which do not alleviate the anemia.

Other medical therapies are being explored which attempt to increase the hemoglobin via means other than transfusion. At the current time, however, transfusion remains the most effective way of raising or maintaining hemoglobin levels for most patients.
--- End quote ---

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