Today is World Thalassemia Day and it is observed across the globe in solidarity with the patients fighting this disorder. This year’s theme is “Be Aware.Share.Care “ which emphasises all supporters to promote awareness about thalassemia and its impact across the globe and share important information and knowledge to offer the best possible health status and care to patients suffering from thalassemia. Further, this health event seeks every individual to contribute at the personal level to the fight against this disease and serves as a reminder that everyone has a significant role to play and a responsibility to act.This health campaign highlights the need to increase awareness among the populace about the disease, its symptoms and effective preventive measures.

Thalassemias’ are rare, inherited blood disorders characterized by the abnormal production of haemoglobin, the protein molecule in red blood cells that carry oxygen to the body cells.A genetic disorder inherited from the parents, Thalassemia is broadly divided into – alpha, beta and delta thalassemia and is most common among the descendants of Italian, Greek, Middle Eastern, South Asian and African descent. 

Patients with thalassemia suffer from mild to severe anaemia causing extreme fatigue and making the skin pale. Children with thalassemia record a slower growth rate while other problems include brittle bones, enlarged spleen, dark urine, and heart ailments. The American College of Obstetricians and Gynecologists strongly recommend screening for thalassemia in pregnant women and genetic counselling for families with a history of thalassemia.

The diagnosis is done through blood tests, haemoglobin electrophoresis, and DNA mapping. The treatment for patients with thalassemia varies depending upon the severity of the condition. Many patients would often require a blood transfusion, iron chelation, folic acid and bone marrow in a few cases.

Symptoms of Thalassaemia

Generally, symptoms of Thalassemia may vary from mild to severe and life-threatening.

  • Drowsiness
  • Fatigue
  • Chest pain
  • Heart disease
  • Shortness of breath
  • Delayed growth
  • Headaches
  • Jaundice
  • Dizziness
  • Greater susceptibility to infections

Facts

Around 7% of the population globally carries an abnormal haemoglobin gene of Thalassemia.

Low and middle-income countries contribute to 80% of people affected with this genetic disorder

Around 4 million Indians are Thalassemia carriers with 1,00,000 thalassemia patients, making India rank at the top list

Timely treatments like blood transfusions and iron chelation therapy are received by less than 20% of people with beta-thalassemia.

World Thalassemia Day May 8th

However, thalassemia patients are recommended to follow these lifestyle changes for healthy living.

Nutritional Needs:

Thalassemic patients should always be mindful of their nutritional needs and they should strictly follow the diet chart recommended by the doctors. Adequate intake of vitamin C, vitamin D, folate, copper, zinc and selenium are suggested based on the severity of the condition.

Regular Tests:

Patients with thalassemia should undergo regular blood tests to know the levels of albumin, vitamin D, fasting glucose, fasting plasma, zinc, selenium, copper, serum folate etc. Any abnormality in the results should be immediately reported to the doctor.

Avoid Iron In Excess:

Patients should avoid foods that are high on iron. Low iron diet along with folate supplements, black tea is recommended to decrease the absorption of iron into the blood. The patients should also never take vitamins and other supplements without the knowledge of the doctor.

Prevention Of Infections:

Thalassemia patients are at high risk of infections, especially those who had their spleen removed. Frequent washing of hands, and avoiding contact with the sick will reduce the risk of infections.

Vaccinations:

Patients with this disorder would require regular vaccinations like annual flu shots, meningitis, pneumococcal, hepatitis B to prevent infections. If a patient develops a fever or any infections after administering the vaccine, see a doctor immediately.