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SECTION 2
Thalassemia Major
Chapter 2
So You Want to Know More?
 
 
Some people will feel that they have enough information now, but perhaps you want to go into things more deeply? In the following chapters we answer questions that thalassemics and their families often ask us. In this chapters we talk about some general questions. There are separate chapters on important topics like blood transfusions, Desferal, Splenectomy, etc.

Questions About Life-Expectancy And "Quality Of Life" For Thalassemics On Regular Transfusion

How long can a person with thalassemic major live?
         People sometimes don't like to ask this question directly, but thalassemics and their parents must often ask themselves.
         It is difficult to give a simple reply, because:
         It is very hard to know the answer for thalassemics who are well at present.
         The disease and its implications are changing almost from day to day, because of advances in treatment.
         We have all seen that patients with thalassemia are living longer and longer. Today it is reasonable to think that people with thalassemia major, who have been well treated from the beginning, may well live as long as people without thalassemia. Only time will tell whether this prediction is right, or too optimistic.
         On the other hand, if we want to be pessimistic, it is true that thalassemics live with more risks than others, because of the amount of medical treatment they need. all medical treatments include some risk. But even so, well-treated thalassemic patient at the present day can have an excellent life-expectancy.


What is the "quality of life" for a thalassemic?
         A chronic disease always causes some limitation of quality of life, especially when it requires frequent and complex treatment, as thalassemia does.
         All the same, the treatment should not be allowed to have a profound effect on a thalassemic's life. In particular doctors and hospitals should make the effort to arrange out patients visits for transfusions so that they interfere as little as possible with normal life. Treatment should not interrupt schooling or work. To manage this, some centers arrange transfusions for week-ends, others in late afternoon or at night
         In fact, most thalassemics do lead an essentially normal existence. They go to school, take part in social activities and work, get engaged, and get married like everyone else. We are certain that, as time passes, the quality of life will steadily improve.
 

 
Do thalassemics necessarily have thalassemic children?
         No. Usually their children will be healthy, but it does depend on who they marry.
         Figure 8 shows that if a thalassemic marries a "normal", all the children will be healthy carriers. They must inherit a thalassemia gene from their thalassemia parent, and they must inherit a normal one from the normal parent, so none of them can possibly have thalassemia major.
         Figure 9 shows that if a thalassemic marries a thalassemic carrier, in each pregnancy there is a 50 % chance that the child will be thalassemic, and a 50 % chance that it will be a healthy carrier. This is quite a common situations, since thalassemia carriers sometimes have a special understanding for people with thalassemia major. Then they have to choice whether to use parental diagnosis or not.
         Figure 10 shows that is one thalassemic marries another, all their children will be thalassemics. This situation arises sometimes too, because thalassemics have so much in common, they often feel particularly close to each other. When it does happen, they usually decide not to have any children. but in the future, if it becomes possible to correct thalassemia by genetic engineering, it could become possible even for such couples to have their own, healthy children.


Do Thalassemics have to have a special diet?
         In General, No. but we do make a few recommendations.
         Try to avoid animal food that are rich in iron, such as liver and spleen. You should also avoid breakfast cereals that have iron supplements, you can find out from the side of the packet.
         It is also wise to avoid alcoholic drinks, or to drink them only moderately. This is because the liver is specially vulnerable in thalassemia, because of the iron stored in it, and the possibility that you were exposed to hepatitis in the past.
         These are only recommendations, not absolute rules.


Can thalassemics join in Sports?
         The answer is the same as for non-thalassemics, it depends on whether or not you have any heart problems. You can discuss it with your doctor or heart specialist when you have your check-up. Sports, up to their own capacity. Your body itself will tell you when to stop, because if you "overdo" it you will get tired.


Can thalassemics take any kind of holiday they want?
         Visits to high mountain areas need acclimatization, and a normal hemoglobin level. It might be wise for thalassemics to avoid altitudes above 11,000 feet, or to make sure they have a transfusion immediately before going to high mountains. Otherwise, there are no restrictions.
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