Thalassemia is one among many debilitating diseases that causes immense stress mentally, physically and financially. The genetic disorder is associated with blood that causes the body to produce less or no haemoglobin at all. Haemoglobin is the protein in the blood responsible for red blood cells to have their colour – the absence of this essential protein leads patients to have acute anemia and increased levels of iron in the body which in many cases, ends up taking the life of the patient, if not treated consistently.
At SAHAVE, we are working towards eradicating this disease completely. Here are few facts you should know about the disease:
1. Thalassemia is a preventable disease
Thalassemia is usually passed on from parent to child, when both the mother and father of the child are Thalassemia carriers. In order for a person to check whether they are a Thalassemia carrier, all they need to do is take a simple blood test called the ‘Carrier Genetic test (CGT)’ or more commonly ‘Hba2’ when they are in a headspace to bear children. Experts advise everyone of a marriageable age to get the test done to know if they are a Thalassemia carrier, so they can prevent getting married to another carrier. In the event that the child inherits the disease from two carrier parents, the expenses run into thousands of rupees each month, just for the baby’s survival.
2. There are two kinds of Thalassemia
Broadly, Thalassemia can be classified into two kinds – Thalassemia Major and Thalassemia Minor. People suffering from Thalassemia Minor tend to have less obvious and less invasive sings of the disease. In some Thalassemia minor cases, people go without ever noticing that they are affected by the disease, since the most they are affected by, is just minor onset of Anemia, that can be prevented with oral medicine. In Thalassemia Major patients, however, the symptoms are more life-threatening – with patients getting affected by iron overload, bone deformities, enlargement of spleen and liver, heart problems, delayed puberty, lack of appetite and jaundice.
3. Indians are the worst affected
While the disease is rampant in mediterranean, asian and african countries, India is actively seeing a rise in the number of patients being born with the disease every single year. In addition to 65,000-67,000 β-thalassemia patients in our country already existent, 9,000-10,000 cases are added every year. Adding to the fact is that the income levels most underprivileged people in India aren’t suitable to care for a patient affected by the disease in the family, since the treatment is ongoing and long term.
4. Affected patients need transfusions regularly
The way Thalassemia affects the body, is that the cells in the body receive less oxygen due to lack of adequate production of the red blood cells, caused due to less or no presence of Haemoglobin. Due to less oxygen in the body, in more acute cases, people experience shortness of breath, dizziness and headaches. Overtime, if there is no adequate supply of oxygen to the cells, bodily organs begin to shut down. One safe option to prevent this, is to supply the patient with additional red blood cells that can ensure the required oxygen supply to various body parts.
5. Treating Thalassemia is expensive
According to reports, each family needs to spend an additional Rs 8,000 – Rs 10,000 just for blood transfusions, and follow-up medication of the affected patients. This is excluding other expenses like travel and other miscellaneous expenses the family incurs while fending for one affected child. Additionally, these figures would be a ballpark for an ideal scenario – where blood units of the child’s affected blood type are readily available. In most cases, they aren’t, forcing the family and friends of the affected to go on a wild goose chase for just one unit of blood every single month.
If you are a healthy individual who is eligible to donate blood regularly, download the SAHAVE app to check out which blood banks and societies around you need blood. Donate blood, request for blood from 2,50,000 eligible donors registered with us, and save lives with SAHAVE.