World Thalassemia Day tries to create awareness about the disease and help thalassemia patients lead a normal life despite the burden of the disease. The theme for 2021 is “Addressing Health Inequalities Across the Global Thalassemia Community”.
Thalassemia is a very common blood disorder in Bangladesh. According to Bangladesh Thalassemia Foundation, 60000 children suffer from thalassemia. A research published in 2020 found that 67% of the 1578 college students they had surveyed, had never heard of thalassemia. However, 88% of the respondents showed interest in ‘premarital’ screening to prevent thalassemia.
It is critical to eliminate the lack of knowledge and create more awareness among people. It is time to learn more and draw attention to thalassemia and the growing health inequalities that affect affected patients.
Thalassemia is an inherited blood disorder caused when the body doesn’t make enough of a protein called hemoglobin, the protein in red blood cells that carries oxygen. The disorder results in excessive destruction of red blood cells, which leads to anemia.
Different types of thalassemia
Hemoglobin, which carries oxygen to all cells in the body, is made of two different parts: alpha and beta. Regular amounts of hemoglobin can’t be created if either the alpha or beta part isn’t produced. Having low alpha is called alpha-thalassemia. Having low beta is called beta-thalassemia.
The severity of thalassemia is indicated by the terms “trait,” “minor,” “intermedia,” or “major”. A person who has a thalassemia trait may not have any symptoms at all or may have only mild anemia, while a person with thalassemia major may have severe symptoms and may need regular blood transfusions.
How does thalassemia affect my body?
You may experience thalassemia-affected low blood count or anemia symptoms if you have thalassemia because your body produces fewer red blood cells. According to the Centers for Disease Control and Prevention (CDC), when you have anemia, you might experience:
- Tiredness or weakness
- Shortness of breath
- A fast heartbeat
- Leg cramps
- Difficulty concentrating
- Pale skin
To counteract, your body will try very hard to make more red blood cells. The two places where the blood cells are made are the
- Bone marrow
Because your bone marrow will be working harder than using to make more blood cells, it might grow bigger. This will cause your bones to expand and stretch, making them thinner and more easily broken.
Similarly, the spleen can get very big as it tries to make blood cells. Because of this, people with thalassemia are said to be “immunocompromised,” which means that some of the body’s anti-infection defenses aren’t working.
People with mild to extreme types of thalassemia have severe anemia symptoms early in life. People with less serious types of thalassemia can only find out when they are experiencing anemia symptoms, or because a doctor discovers anemia during a regular blood test or another test.
As thalassemia is hereditary, some people learn about their thalassemia from relatives who have the same disease.
Higher risk for severe illness from COVID-19
People with thalassemia could be at a higher risk of serious illness from COVID-19, according to the Centers for Disease Control and Prevention (CDC) updated guidelines. They suggest that patients with thalassemia should:
- Consult with their doctor virtually to know when to visit the emergency department if required
- Consult with their doctor virtually to manage thalassemia medicines and treatments, as well as any other health problems they may have
- In the event of an emergency, inform friends and family about the need for blood donors
Treatment, cure, and prevention
Thalassemia can be treated with regular blood transfusion at 2-4 week intervals to correct the anemia. Ideally, the patients need blood free of white blood cells.
Chronic blood transfusion causes iron overload in the liver, heart, and pancreas, which may lead to further complications such as heart failure, liver cirrhosis, diabetes, and growth retardation. To avoid iron toxicity, patients must take iron-reducing drugs for the rest of their lives.
Bone marrow transplantation (BMT) is the only cure for thalassemia. However, many factors restrict its potential for widespread use. Firstly, BMT requires a matched sibling donor and such donor is available in only 1-2% of families. Second, as opposed to traditional blood transfusion therapy, BMT carries a greater risk of mortality and rejection. It’s also a costly procedure.
Thalassemia is not a preventable disease as it is inherited. However, only when both parents have the thalassemia gene does the disease develop in children. Each pregnancy in such families has a 25% chance of producing a thalassemia-affected child. Hence partners are advised to do prenatal tests that can detect these blood disorders before birth. Kids, on the other hand, would be unaffected if either parent is healthy.