World Thalassemia Day was celebrated on May 8 every year to commemorate Thalassemia victims and to encourage those who struggle to live with the disease. The 2022 theme is an open call to action to all supporters to promote awareness about thalassemia and its global impact and share essential information and knowledge to support the best possible health, social and other care for patients with this disease.
WHAT IS THALASSEMIA DISEASE?
Thalassemia is an inherited blood disorder that is characterized by less hemoglobin and lesser than normal blood cells. A person suffering from thalassemia has at least one of the parents as a carrier of the disease.
TYPES OF THALASSEMIA
Alpha thalassemia occurs when some or all of the 4 genes that make hemoglobin (the alpha-globin genes) are missing or damaged.
There are 4 types of alpha thalassemia:
- Alpha thalassemia silent carrier. …
- Alpha thalassemia carrier. …
- Hemoglobin H disease. …
- Alpha thalassemia major.
SIGNS AND SYMPTOMS
There are several types of thalassemia. The signs and symptoms you have depend on the type and severity of your condition. Some people who have only one affected hemoglobin gene don’t have thalassemia symptoms. Thalassemia signs and symptoms can include:
- Fatigue, drowsiness, weakness.
- Pale or yellowish skin.
- Facial bone deformities.
- Slow growth.
- Abdominal swelling.
- Chest pain.
- Greater susceptibility to infection.
- Dark urine.
- Shortness of breath.
Treatment depends on the type and severity of thalassemia.
- Blood transfusions: These can replenish hemoglobin and red blood cell levels.
- Iron chelation: This involves removing excess iron from the bloodstream.• Folic acid supplementation: People who receive blood transfusions and chelation may also need folic acid supplements. These help the red blood cells develop.
- Bone marrow, or stem cell, transplant: Bone marrow cells produce red and white blood cells, hemoglobin, and platelets. In severe cases, a transplant from a compatible donor may be an effective treatment.
- Gene therapy: Scientists are investigating gene therapy techniques to treat thalassemia. Possibilities include inserting a normal beta-globin gene into a patient’s bone marrow or using drugs to reactivate the genes that produce fetal hemoglobin.
Currently, thalassemia cannot be prevented because it is an inherited (passed down from parents to the child) blood disorder. It is possible to identify carriers of this disorder with genetic testing.
The theme for the International Thalassaemia Day (ITD) 2022 is“Be Aware. Share. Care: Working with the global community as oneto improve thalassemia knowledge.’’