World Thalassemia Day 2023
Work together to inspire change!
Every year the 8th of May is observed as World thalassemia day, a special day dedicated to people battling thalassemia. This day aims to raise public awareness of the condition, encourage early diagnosis and treatment, and support research efforts to find a cure. This blog will take a peek at the significance of this day and how we can all work together to increase awareness and help individuals impacted by this difficult condition.
World Thalassaemia Day 2023 Theme
Better education for a better change!
The International Thalassaemia Day 2023 emphasizes the liberating potential of education and its link to proper and effective care for this condition. Building on the success of last year's theme, the 2023 campaign, titled 'BE AWARE.SHARE.CARE' - Strengthening Education to Bridge the Thalassaemia Care Gap' goes a step further by highlighting the need for improved access to quality, lifelong thalassemia education for people living with the disorder and healthcare professionals involved in their care.
Importance Of World Thalassemia Day 2023
Thalassaemia is an inherited (genetically transmitted) autosomal recessive illness that can be inherited from either or both parents. It affects red blood cells due to a genetic mutation that causes hemoglobin's alpha and beta-globin chains to be depleted. This results in low red blood cell synthesis and a shortage of oxygenated blood flow to body tissues (anemia). There are over one lakh thalassemia sufferers in India and 40 lakh carriers. Major thalassemia treatment can be extremely costly, involving stem cell transplants, continuous blood transfusions, and chelation therapy. It is critical to prevent congenital abnormalities (thalassemia) before birth rather than treating the condition after birth.
History Of World Thalassemia Day
Panos Englezos, president and founder of the Thalassemia International Federation (TIF), established the inaugural World Thalassemia Day, or International Thalassemia Day, on the 8th of May, 1994. Panos Englezos founded this day in memory of his son George and the many thalassemia sufferers who battled the disease.
Thalassemia in India
Do you know? India is the leading nation with more than 40 million thalassemia gene carriers. In India, it has been estimated that every year around 10,000 kids are born with thalassemia major, a severe form of thalassemia where lifespan is estimated to be about 20 – 30 years. The latest reports highlight that due to a lack of awareness and access to blood transfusion, lakhs of thalassemia patients die every year. On this world thalassemia day 2023, let's not overlook this disease and become responsible for promoting awareness about thalassemia and its complications.
What Is Thalassemia?
Thalassemia is a chronic blood disorder that occurs due to the mutation of genes responsible for hemoglobin production. Thalassemia is purely genetic, and it happens when children inherit mutated genes from their parents. Even if either of the parents is a carrier, there is a high chance for children to get thalassemia. Thalassemia is a chronic condition where the body fails to make sufficient hemoglobin. This leads to the abnormal synthesis of hemoglobin and results in the destruction of red blood cells. Thalassemia is associated with anemia due to red blood cells and hemoglobin depletion.
Thalassemia occurs due to the inheritance of abnormal genes involved in hemoglobin production. Children are at high risk of developing thalassemia if both parents are carriers of thalassemia. Sometimes, your ancestry does play a role, and people of Southeast descent are susceptible to thalassemia.
Types Of Thalassemia
As said earlier, types of thalassemia have two proteins, i.e., alpha and beta proteins, are involved in making hemoglobin. If a person lacks either of the two proteins, the red blood cells fail to carry oxygen to other parts of the body and cause several complications.
Do you know? Four genetic copies are needed for the synthesis of alpha protein. Patients with alpha thalassemia have defects in the alpha protein of the hemoglobin. A person will become a carrier if inherited with one abnormal gene copy. A person who has inherited two abnormal copies may experience only mild symptoms. In some rare cases, a person can inherit more than two abnormal copies and may suffer from severe alpha thalassemia.
In contrast to alpha protein, only two genes are involved in beta-protein production. If any person has inherited one defective gene copy, they may have mild symptoms of beta-thalassemia, called thalassemia minor. If a person has inherited two defective copies, then that person is subjected to moderate to severe thalassemia symptoms, and this condition is named thalassemia major.
Symptoms Of Thalassemia
- Facial bone deformities
- Yellowish discoloration of the skin
- Stunted growth
- Inflammation of the spleen and liver
- Breathing difficulty
- Poor appetite
Treatment Options For Treating Thalassemia
- Blood transfusions: Periodic blood transfusions are required to prevent a sharp drop in hemoglobin count and improve patient survival. Patients with thalassemia require blood transfusions once in 2 to 3 weeks.
- A bone marrow transplant can benefit children with thalassemia to lead a long, fulfilling life. Well, it depends on the availability of a suitably matched donor, and it is one of the treatment interventions to cure thalassemia.
- Surgery, such as spleen removal, will be performed in some patients with chronic spleen inflammation.
- Your doctor will prescribe supplements such as folic acid to prevent a drop in hemoglobin count.
- Diet: It is recommended to consume leafy greens and legumes and follows a plant-based diet to prevent anemia and folate deficiency. It is better to avoid high-fat meat and foods that contain fortified iron because it can build up iron in your body.
The Bottom Line
Donate blood and give a new lease of life.
If you know that you are a carrier of the thalassemia gene, consult your doctor and have genetic counseling to prevent the thalassemia from running through your family. Sometimes, your doctor may also recommend in vitro fertilization methods to protect your baby from thalassemia disease. The death rate of children affected with thalassemia is growing due to a shortage of blood transfusions. So on this world thalassemia day 2023, let's all shower our care and love on all the needy thalassemia patients by donating blood, as they require frequent blood transfusions.