What is Thalassemia Major
The severe form of Thalassemia, Thalassemia major, occurs when a child inherits two mutated genes, one from each parent. Children born with Thalassemia major usually develop the symptoms of severe anemia within the first year of life. They lack the ability to produce normal adult hemoglobin (red blood cells).
Children with Thalassemia major are so chronically fatigued they fail to thrive and do not grow normally. Left untreated, this disorder will cause bone deformities and eventually will lead to death within the first decade of the child’s life.The only treatments that are provided to patients are regular transfusions of red blood cells.
Thalassemia major patients require transfusions of red blood cells, every 4 to 6 weeks depending on the individual’s consumption of the infused cells. The complication that results from constant blood transfusions is iron overload, also known as secondary hemochromatosis. Once iron is stored in the organs, it will eventually lead to organ failure and will lead to death.Iron is a component of hemoglobin, essential to the body, but once red blood cells break down the excess iron cannot be removed, resulting in the absorption of too much iron in the body. It is necessary that this excess iron be removed because it stores in the vital organs of the body, such as the heart and liver.
Fortunately, a drug called Desferrioxamine (Desferal) is designed to remove the excess iron from the thalassemic patient.Although, Desferal has significantly changed the prognosis of patients with Thalassemia major, many of the patients find the nightly 10-12 hour infusions of Desferal tedious, have difficulty with compliance, and find the pump-injected medication painful. Currently, this is the only treatment available to Thalassemia patients, a cure needs to be found.
source : wikipedia
I just watch a story about thalassemia last night, and I’m freaking out that the medical expense for “surviving” a thalassemia patient minimum 10 million rupiahs / month. (This is the cost for blood transfusion and desferal injection every day –> about a year ago.. ).
Can you imagine that you have to pay for 10-12 million/month (minimum) just to survive each day…. and there is no guarantee that you will not die tomorrow.. because a patient with this disease cannot live long, average patient only live about 20 years old…
There are an estimated 60-80 million people in the world who carry the beta thalassemia trait alone. This is a very rough estimate and the actual number of thalassemia Major patients is unknown due to the prevalence of thalassemia in less developed countries in the Middle East and Asia where genetic screening resources are limited. Countries such as India, Pakistan and Iran are seeing a large increase of thalassemia patients due to lack of genetic counseling and screening.
You cannot cure thalassemia yet because they haven’t found the medicine, but you can prevent it by doing Blood Screening before Married, so you will know whether one of you are the “carrier” and the possibility of you guys having Thalassemia babies. So you are positive that you won’t create one more Thalassemia babies born into this world.
It’s been hard for me as a normal person to make a living. But for them it’s way much harder to struggle for living. So enjoy and life your live with passion! Be grateful to God if you are healthy today….
ENJOY YOUR LIFE !!!!