Celebrated on the 8th of May, the International Thalassaemia Day is devoted to raising awareness amongst the general public and decision-makers about thalassaemia, promoting and strengthening the lifelong and difficult struggle of patients against this severe blood disease.
This global observance also honours the longstanding efforts of doctors, other medical staff dedicated to better the lives of patients from the disease and scientists bringing new advancements in the field to eradicate the disease.
Let’s take an in-depth review of the struggles of the patients suffering from this genetic disorder and raise awareness about the disease and its symptoms.
Theme 2021
Every year since 1994, Thalassemia International Federation (TIF) sets a theme for International Thalassemia Day and organises numerous activities based on that particular theme. This year’s theme is “Addressing Health Inequalities Across the Global Thalassemia Community”.
These campaign drives aim at promoting awareness among the masses and drawing world’s attention towards the severity of the disease to accelerate discussions and execute plans related to its prevention, management, and treatment.
Thalassemia in Pakistan
Thalassaemia is a blood disorder passed down through families (inherited) in which the body makes an abnormal form of hemoglobin, the protein in red blood cells that carries oxygen. The disorder results in excessive destruction of red blood cells, which leads to anemia.
Anemia is a disorder in which your body doesn’t have enough normal, healthy Red Blood Cells (RBC). This disease is inherited, meaning that at least one of the parents is a carrier of the disease. It is caused by either a genetic mutation or a deletion of certain key genes.
According to a report, approximately 100,000 patients are suffering from Thalassaemia in Pakistan and every year 5,000 babies are born with this deadly disease. These patients need regular blood transfusion and iron chelation after consultation with a qualified Hematologist along with regular diagnostic investigations on monthly basis which is unaffordable for the poor families in Pakistan.
Symptoms
There are several types of thalassemia. The signs and symptoms you have depend on the type and severity of your condition.
Thalassemia signs and symptoms can include: Fatigue; Weakness; Pale or yellowish skin; Facial bone deformities; Slow growth; Abdominal swelling; Dark urine.
Some babies show signs and symptoms of thalassemia at birth; others develop them during the first two years of life. Some people who have only one affected hemoglobin gene don’t have thalassemia symptoms.
How to counter it?
One way to counter high rates of thalassaemia is to make premarital blood screening compulsory. While often a thalassaemia minor carrier leads a normal life and is oblivious to his or her condition, if one gets married to another, there is a higher likelihood of their child being born with thalassaemia major.
The risk is even greater in cultures where marriages within the family are common, such as cousin marriages in Pakistan. Countries such as Iran which sit on the ‘thalassaemia belt’ have been able to curb the disorder successfully through extensive thalassaemia prevention programmes since the 1990s.
As part of these programmes, all couples wishing to marry are required to undergo blood screenings before being given their marriage certificate. Pakistan should look to the example of its western neighbour and start a similar programme so that men and women can make an informed choice.
