The rational
Thalassemia is a severe disorder of the blood threatening the lives of thousands of children all over the world. It is estimated that 8-11% of the population in southern India are affected. Patients who don’t receive proper care and treatment are unlikely to live until adulthood.
Nivethan Trust supports 65 children suffering from Thalassemia and their families from economically challenged backgrounds in Madurai.
To learn more about Thalassemia read our short and extensive Brochures about it!
Nivethan Trust supports 65 children suffering from Thalassemia and their families from economically challenged backgrounds in Madurai.
To learn more about Thalassemia read our short and extensive Brochures about it!
What we do
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- The knowledge about Thalassemia among the general public is alarmingly low in spite of the seriousness the disorder bears. The first step is to identify patients and to inform them and their families about the disease, its significance and what are the necessary steps to ensure the child’s well being.
- The parents are guided and counseled by expert doctors to whom Nivethan establishes a connection.
- Thalassemics are in need of blood transfusion every few weeks. The required units of blood are facilitated and provided by Nivethan and its partners.
- The treatment for Thalassemia also consists of taking medicines that help the patient deal with the complications of the disorder. Nivethan distributes free drugs to all children monthly.
- Some patients are medically eligible to undergo bone marrow transplant which can cure Thalassemia. For those the procedure is facilitated and financially supported through the trust.
- Recently a Thalassemia Association Madurai of parents, doctors and voluntary organizations has been initiated to represent Thalassemics, their families and interests towards the public. Regular meetings and get-togethers are hold where the parents are counseled by experts in the fields and informed about recent developments.
View photos of the latest meeting on January 24th 2013 in the Madurai Gandhi Museum! |
- All parents of a Thalassemic child are so called carriers and have Thalassemia Minor - the disorder is in their genes but doesn’t affect them. If two carriers have a child it has a 25% chance to suffer from Thalassemia Major. Most carriers don’t know about their status and their number is not known but expected to be alarmingly high. To prevent the spread of the disorder and more children born with it this carrier status (or Thalassemia trait) must be revealed through screening.
- This, together with other awareness raising initiatives is part of the prevention program of Mission Thalassemia by Nivethan.
Together with the Cure2Children foundation we produced a documentary about Thalassemia and are working on a website providing all the information about the disorder
How you can help Thalassemics
Make a donation: The cost per child per month is Rs 3000 for life saving chelation drugs alone. Most patients come from very poor families who have difficulty to even bear the costs of travelling to a hospital for blood transfusion regularly. They are reliant on financial support!
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Be a blood donor: Without receiving blood transfusion every few weeks Thalassemics suffer from severe damages to the body and premature death. The procedure is very simple and only requires a generous donor. Blood donation is save, not harmful at all (in contrary: it is good for health!) and saves lives!
Visit www.maduraiblooddonors.org to register as a donor and be informed about our donation camps twice a year. |
Spread awareness: Learn more about Thalassemia and join us spread the word. You can participate in our work by volunteering and awareness raising!
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