With the help of State intervention, it is now possible to target a lot of patients who have not been able to afford treatment available due to the huge cost associated with the same and also because they are usually out of reach. In the coming years we hope to change this situation for the better so as to make it more patient friendly so that maximum patients can benefit from our efforts.
Does your loved one suffer from Thalassemia?
Thalassemia is a genetic blood disorder. People with thalassemia disease are not able to make enough hemoglobin, which causes severe anemia. Hemoglobin is found in red blood cells and carries oxygen to all parts of the body. When there is not enough hemoglobin in the red blood cells, oxygen cannot get to all parts of the body. Organs then become starved for oxygen and are unable to function properly.
Depending on the individual’s haemoglobin level and general body condition, a thalassemia patient may require blood transfusion every month or every fortnight, else they would die. The disease occurs both in males and females.
The problem with thalassemia patients is that blood transfusion alone is not enough for their survival. Due to repeated blood transfusion, iron gets loaded in the body which in turn can damage the liver, kidneys, heart and other vital organs. Therefore, it’s essential to use drugs or iron chelators to bring down the iron level in the body. The costly iron chelation therapy using injections such as deferoxamine and medicines is required to prevent overloading of iron in the body. Bone marrow transplant is another option but again, this is a costly mode of treatment and not all patients are suitable for transplant.
The most severe form of alpha thalassemia major causes stillbirth (death of the unborn baby during birth or the late stages of pregnancy).
Children born with beta thalassemia major (Cooley anemia) are normal at birth, but develop severe anemia during the first year of life.
Thalassemia is now under handicap category.
- Bone deformities in the face
- Growth failure
- Shortness of breath
- Yellow skin (jaundice)
People with the minor form of alpha and beta thalassemia have small red blood cells but no symptoms.
Treatment for thalassemia major often involves regular blood transfusions and folate supplements.
If you receive blood transfusions, you should not take iron supplements. Doing so can cause a high amount of iron to build up in the body, which can be harmful. People who receive a lot of blood transfusions need a treatment called chelation therapy. This is done to remove excess iron from the body.
A bone marrow transplant may help treat the disease in some people, especially children.