Inform, educate, and make people aware of Thalassemia this year

1 in every 25 Indians is a carrier of Thalassemia

New Delhi, May 08, 2017 : With a prevalence of 288,000 with 60,000 live births each year, Thalassemia is the world’s largest rare disease community. Due to its heavy prevalence in the Mediterranean region (Italy, Greece), it is also called Mediterranean anemia. Statistics indicate that approximately 15 million people suffer from thalassemic disorders worldwide. Apart from this, there are about 240 million carriers of β-thalassemia worldwide, which is 1.5% of the world population. One in every 25 Indians is a carrier of thalassemia.

A genetic blood disorder where the bone marrow fails to produce the required red blood cells for the body to thrive, Thalassemia requires lifelong blood transfusions and other therapies. Thalassemia minor people are carriers and can lead normal lives without any clinical interventions. Every year, 8th of May is marked as the World Thalassemia Day.

Speaking about this, Padma Shri Awardee Dr K K Aggarwal, National President Indian Medical Association (IMA) and President Heart Care Foundation of India (HCFI) and Dr RN Tandon – Honorary Secretary General IMA in a joint statement, said, ” India has about 35 lakh plus thalassemia majors. This day should be used to inform, educate, and make people aware of this disorder and how to prevent it. One important thing to consider today is making genetic counseling for prenatal testing a must so that other children in the family do not carry this disorder. There is also a need to dispel the myths surrounding this condition and ensure inclusion.”

Thalassemia is the most common genetic disorder genetically passed on to children. Its symptoms include weakness, fatigue, slow growth, pale appearance, abnormal swelling, abnormal bone structure (especially on the face and skull), heart problems, and iron overload. On World Thalassemia Day, it is imperative to raise awareness on this disorder, its causes, symptoms, and possible treatment options.

Adding further, Dr K K Aggarwal, said, “As is the case of any other disease or health condition, there is an immediate need for policy changes with regard to Thalassemia to ensure health equity and justice. Many individuals including children In India succumb to this disease due to lack of access to drugs and treatment. We need a policy which will help enable free delivery of treatment and drugs to every nook and corner of the country.”

Thalassemia is a hereditary disease and can be prevented but not cured with medicines. To ascertain whether one is a carrier, a blood test is important. In pregnant women, prenatal tests help detect this condition before birth. In case one or both the parents have this condition, it is a good idea to consult the doctor to reduce the risk of passing it on to the children.