What is Thalassemia?
Thalassemia is a severe disorder of the blood. Affected persons can’t form proper hemoglobin, a chemical in the red blood cells (RBCs) that is responsible for carrying oxygen through the body.
Most patients are children as Thalassemia appears in the first months of life but also because it is a deadly condition when remaining untreated, living until adulthood is rather unusual then.
The red blood cells collapse due to the unstable hemoglobin structure, one suffers from anemia, a low number of RBCs. This can only be treated with blood transfusion every three weeks.
Unfortunately the transfusion causes another major problem in Thalassemia patients – iron overload. It damages vital organs like liver, spleen and heart and can become a serious condition. The iron excess can be removed through giving medicines, so called chelation drugs.
Children with Thalassemia major are normal at birth but become anemic between the age of three and eighteen months. They are pale, do not sleep well, do not want to eat, and may vomit frequently after feedings. If Thalassemia major remains untreated, children usually die between one and eight years of age.
Learn more about Thalassemia here
Thalassemia patients in Madurai:
At present there are around 60 children with Thalassemia undergoing regular treatment in Government Rajaji Hospital, Madurai. These children are not only from Madurai, but come from nearby districts like Theni, Ramnad, Virudunagar, Dindigul, etc.
Thalassemia the lesser known disease in this part of the state is not properly addressed by any forums, not focused by hospitals or clinics in the whole of Tamil Nadu excluding Chennai. Besides, the patients reporting to the Government Hospitals are economically backward and can’t even afford to visit the hospital for treatment.
Institute of Child Health and Research at Government Rajaji Hospital, Madurai provides free blood transfusion service for these Thalassemia patients. Patients are provided with free units of blood from the blood bank located within the hospital which solely depends on voluntary blood donations.
Thanks to blood donors and donor associations for arranging blood to these ailing patients!
Nivethan Trust provides life-saving iron chelation tablets to these patients regularly and also provides them support for treatment and cure. Learn about Nivethan Trust’s work to support Thalassemia patients here under ‘Mission Thalassemia’.
Check out “Documentary by Nivethan Trust about Thalassemia patients in Madurai”
What you can do to help Thalassemia patients:
1) Donate blood, help children with Thalassemia:
Regular blood transfusion is the only option for Thalassemia patients to survive. The cost of blood is unaffordable. Replacing blood donors for obtaining blood is an option. But, sometimes parents have a difficulty to find a blood donor for their child. We urge people to donate blood for children with Thalassemia. You can donate blood to Thalassemia patients getting treatment in Government Rajaji Hospital, Madurai. You can just walk into the Blood Bank located within the Hospital and donate blood. For more information or clarifications if any, please call us at +91-98948 35600.
2) Donate money for life saving medicine to Thalassemia patients:
Unfortunately there are around 60 children undergoing regular treatment (Blood Transfusion) in Madurai Government Rajaji Hospital and they are from economically downtrodden families who cannot afford to buy medicines for their children. The medicines are not supplied by the Government and most of the children are without medication for a long time. The cost per child per month is Rs 1,000 for life saving chelation medications alone.
Nivethan Trust has been providing these medicines to these patients for last three years with the support of individuals and associations in Madurai. We request you to kindly help us in this effort of supporting these suffering children. Please contact us to receive more details.
3) Spread awareness about the disease:
Learn more about Thalassemia and join us spread the world. You can participate in our work and also join us as a volunteer helping to reach out to more people.
As Thalassemia is a genetic disease the disposition to have a Thalassemic child lies in the parent’s genes already – they are carriers, so they have Thalassemia minor. There is a 25% chance for every new child to have the major form.
The carrier – or trait- status can be revealed through a genetic test. Comprehensive screening and genetic counseling for carrier parents is necessary to fight Thalassemia on the long run! Make people aware of this!