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Thalassemia Initiatives

Thalassemic Child1

Thalassemia is a genetic blood disorder, where affected person cannot produce normal hemoglobin. This disorder is more prevalent in Sindhi, Punjabi, Gujarati and Lohana community. In India, at every 10000 birth one child born with Thallassemia Major. There are almost 1000 Thalassemia Majors in Ahmedabad alone and this is on the rise.

If both the parents are Thallassemia Minor, 25% chances are that they could have Thalassemia Major Child, 50% chances of having Thalassemia Minor child and only 25% chances of having absolute normal child. Life of Thalassemia children is very difficult and the family carries huge burden. Eventually the child dies at very young age and family succumbs to chronic poverty.

Thalassemia Initiatives of Prathama Blood Centre is a part of large spectrum of activities to eradicate thalassemia from the society and help the affected population with needed support. The initiatives have 3 major components.

1.Thalassemia Adoption Program
2. Thalassemia Eradication Program
3. Blood Support Group

Through the above activities Prathama acts as a bridge between the families and society to support the families financially, emotionally, socially and morally. Individual donors and organizations are approached to fund these families to reduce their burden.

Further, to prevent occurrence of Thalassemia, Prathama has taken steps to check young, unmarried youth and know if they are carriers of Thalassemia trait. This helps to prevent wedlock with another Thalassemic thus reducing chance of giving birth to a Thalassemic child.

To enhance safety of thalassemic persons who undergo repeated blood transfusions, Prathama has formed a groups of blood donors who exclusively donate blood for given child. By this safe blood is available readily to the child and reduces transfusion related reactions.

Life of Thallassemia Major Children

  • Thallassemia Major children are unable to produce healthy and effective Red cells. Hence they have problem of pallor, weakness, growth retardation. Bone deformities etc.
  • Thallassemia Major is an incurable health problem.
  • For survival, they need repeated Red cells transfusion (RBC) at two to three weeks interval. Hence it becomes apparent that life of these persons is dependent on regular Blood donors & timely availability of blood.
  • Due to repeated transfusions, there is an iron overload in the body, which gets deposited in heart, liver and pancreas. Excess iron has to be removed with chelator drug which is injected under the skin or given orally. This drug is expensive and difficult to administer.
  • They are at increased risk of blood borne infections like HIV, Hepatitis B and Hepatitis C due to multiple transfusions from different donors.
  • Family of Thalassemic child undergoes huge sufferings, pain and expenses and finally succumbs to poverty.
  • It is a costly affair for a family whose monthly income is less than Rs15, 000/- per month.
  • Thalassemic children will have to undergo blood transfusion from the time of their birth till they survive, thus undergoing stress, pain and huge financial commitment.
  • These children are not covered by any Mediclaim or health security program.