Discussion Forums > Thalassemia Major
The Goal For Thalassemia Patients Today...
Sharmin:
In recent years the treatment and diagnostic procedures for thalassemia patients have improved drastically. At the same time, the understanding of thalassemia and its effects at a microscopic level are much better understood.
With new chelators, it is now possible to have iron levels very near normal - and there is no reason for children to have iron levels greater than 500. Oakland recommends between a range of 200 - 500 for children. Only 10 years ago - it was not recommended for thals to have iron levels below 1000 because of the toxic effects of desferal. It is now recommended that when a child's iron levels approach 200 chelation be decreased and as they appraoch 500 or 600 chelation be gently increased. A split dose - am and pm is safest and most effective.
This lower level of iron load ensures that iron levels are not to high to be contained in the liver - also constantly having a chelator on board binds free iron - free iron is what corrodes and causes damage to organs.
We also understand that free iron can cause damage at a molecular level - therefore having antioxidants on board at all times protects the body. IP6 is very effective at binding free iron. L-carnitine, vitamin B, (small doses of vitamin C), vitamin E and many others listed in the vitamins and supplements section of this board are very helpful.
Antioxidants also serve other very important functions in the body of a thalassemia patient. Antioxidants such as L-carnitine and vitamin e help remove debris in the plasma which can damage blood vessels, the lungs and the heart. Also, antioxidants assist in keeping the arteries elastic and healthy - which protects against Pulmonary hypertension.
Another important role for chelation and antioxidants is endocrine function - keeping iron levels very low in childhood and adolencense is key to healthy development. Protecting the pituitary gland from iron and free radical damage is very important - without hormones children cannot develop into healthy adults. Protecting endocrine glands ensures that the children will grow healthy and their fertility will be protected.
Another important factor is maintaining a healthy hemoglobin. Allowing the hemoglobin to drop too low is taxing on the bones, the heart, as well as all other organ systems in the body. Low hemoglobin levels also decrease sense of well being and quality of life. Personally, our aim is to prevent the hemoglobin from dropping below 10. A healthy hemoglobin also prevents the spleen from becoming enlarged. An enlarged spleen can lead to increased RBC breakdown - a greater requirement for blood and iron overload. It is also important, when possible, to preserve the spleen in children for normal immune function and prevention of dangerous infections and blood clots.
Because thalassemia has become a chronic, manageable disease and our goal has extended beyond survival. We must now strive for normalcy in health, ability, participation in all activities, life span, appearance and quality of life.
Properly treated, a person with thalassemia should not feel any different than anyone else - this is the goal for treatment of thalassemia today.
My best to everyone,
Sharmin
Pratik:
Nicely said, Sharmin.
-P.
JV:
Sharmin, that was a wonderful post! Every parent and patient should read that post every day. Thank you
Andy Battaglia:
This thread has been "stickied" so that it will remain easily accessible.
Dharmesh:
Very good post. Comprehensive details in one post :biggrin
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