Thalassemia Major
A child is born with Thalassemia Major only if both parents are Thalassemia Minor. An estimated 50 million Indians are Thalassemia Minor. Prevention is key.
Prevention, care & cure of Thalassemia Major
Emphasis on prevention means there will be no care or cure needed tomorrow
LifeBlood Council conducts various activities to prevent Thalassemia Major births
PREVENTION
An estimated 50 million Indians are Thalassemia Minor and unaware that they are. They lead normal, healthy lives. Two partners with Thalassemia Minor run the risk (25%) of having a child with Thalassemia Major, a severe blood disorder.
LifeBlood Council conducts the following activities to prevent Thalassemia Major births.
Initiative / 01
Create awareness
We create awareness about Thalassemia Minor through media channels and spread the need for getting tested. This test, required just once in a lifetime, is an important preventive measure.
Initiative / 02
Conduct Thalassemia Minor Screening Drives
We organise Thalassemia Minor screening drives in colleges, offices, residential areas, organisations representing high-risk communities.
Initiative / 03
Interact with obstetricians
We collaborate with the government and the obstetrician community to incorporate a test for Thalassemia Minor in the protocol for ante-natal care.
Initiative / 04
Sensitise pathology laboratories
We educate pathology laboratories on the significance of identifying high-risk indicators of Thalassemia Minor during routine Complete Blood Count (CBC) tests.
Initiative / 05
Provide access to foetal tests
We facilitate access to foetal tests for at-risk pregnant women and work with the government to establish more affordable foetal test centres.
Involve your organisation
Organise your own Thalassemia Minor Screening Drive
You will be doing a big service to your community by organising a Thalassemia Minor screening drive.
If you are the head of a commercial firm, educational institution or social organisation, you can conduct a screening drive to identify Thalassemia Minors and make a significant contribution.
Some members of your establishment could be a Thalassemia Minor who can be identified with a blood test for abnormal hemoglobins. LifeBlood Council will assist you with a lab team to carry out the test at subsidised rates.
Contact
Get in touch with us at support@lifebloodcouncil.org or call 98201 46448
CARE
An estimated 100,000 Indians live with Thalassemia Major. Children with this blood disorder show symptoms in the first year of life. It calls for life long management with transfusion therapy, chelation (control of iron overload) therapy and periodic laboratory investigations. Rural areas lack the awareness and resources to combat the disorder.
LifeBlood Council’s activities are directed towards providing assistance and care to Thalassemia Major patients all over India
Initiative / 01
Open new day care centres
We establish Thalassemia day care centres especially in areas where there is no infrastructure available for Thalassemia care.
Initiative / 02
Assist existing day care centres
We provide assistance to existing Thalassemia day care centres to help them expand and enhance the quality of care they provide.
Initiative / 03
Provide support for patients
We offer support for transfusion accessories, medicines, chelation accessories, medical investigations and emergency interventions to ensure individuals with Thalassemia Major receive the necessary resources for their care.
Initiative / 04
Liaise with government authorities
We collaborate with government authorities to implement existing programs and introduce new initiatives aimed at relief to Thalassemia Major patients.
Initiative / 05
Build a network
We network with other non-profit organisations in the areas of blood donation and Thalassemia management. Like-minded organisations help us build a successful framework for ensuring blood adequacy and managing Thalassemia effectively.
LifeBlood Council undertakes measures to facilitate a lasting and accessible cure for Thalassemia Major
CURE
While clinical trials for curative therapies are in progress, the only current established cure is hematopoietic stem cell transplantation for Thalassemia Major. The lack of suitable donors is an issue though.
Many hospitals in India are increasingy offering stem cell transplantation today.
Initiative / 01
Conduct HLA typing drives
We organise HLA typing camps for patients, their siblings and parents. This helps in identifying patients who have HLA-matched stem cells donors in their family.
Initiative / 02
Organise stem cell donor registry drives
We organise stem cell donor registry camps in various colleges, offices and residential areas. This helps in identifying stem cell donors from outside the family.
Initiative / 03
Assist in raising funds
We assist and guide HLA-matched patients for raising funds to enable stem cell transplantation.
Initiative / 04
Support transplantation centres
We assist centres for management of patients who are scheduled for transplantation. We also identify sponsors to provide facilities for the upgradation of centres.