A mother of two beautiful children, Lucie Clark was diagnosed with multiple sclerosis while she was slowing losing her eyesight and ability to walk.
Fighting Thalassemia Head On
In the success stories that you have read about stem cell treatments, you would have come across a medical condition known as Thalassemia. In this post you will read about the initiatives that LifeCell & Rotary Club of Chennai Galaxy have taken towards eradication of Thalassemia from the country.
Thalassemia – It is all in the genes
For the benefit of those who are unfamiliar with this condition – Thalassemia is a genetic blood disorder in which the body makes defective Haemoglobin, the protein found in the blood. This causes rapid breakdown of red blood cells and a reduced capacity to carry oxygen around the body. The condition causes anaemia, iron overload in the body causing damages to organs such as heart and liver, bone deformities and an increased risk of infection.
Consanguineous marriages, that is marriages within close relatives is the primary cause of Thalassemia. When two genetic carriers of Thalassemia get married, there is a high chance of their child being born with Thalassemia. While these children appear normal at birth within one year, they develop symptoms such as bone deformities on the face, fatigue, shortness of breath and jaundice. The only respite available for people suffering from Thalassemia is repeated blood transfusions, which is however not a permanent solution. If left untreated, the condition shortens the lifespan. For Thalassemia affected children from modest financial backgrounds, treatments can cause severe financial strains.
An estimated 40 million Indians are Thalassemia carriers and about 10000 Thalassemia Major patients are born every year.
In year 2012, LifeCell & Rotary Club of Chennai Galaxy came together to launch Project Siranjeevi to work towards the vision of a Thalassemia free India by year 2020. Towards this, LifeCell has committed a period contribution to the corpus fund allocated for treatment and awareness programs. The approach involves screening a population for Thalassemia carriers and patients and tackling the situation through:
- Treatment of affected children
- Setting up blood banks to facilitate transfusion
- Medication & transplantation
- Organizing awareness programs
- Screening & counseling men and women of marriageable age
As the first step, the project began as a pilot at the Sitteri Hills in Dharmapuri district. A study done across the 63 hamlets indicated the incidence of Thalassemia in the children who were receiving blood transfusions at the government hospital at Dharmapuri. The team took immediate action:
- As some of the children required immediate medical intervention, they were brought to VHS Chennai to be checked by Dr.Revathy Raj, President, Thalassemia Welfare Association. Stem cell transplantations were also organized for these children
- Medical camps were set up at strategic locations on the hills to facilitate screening at remote locations
- Awareness camps are being organized to counsel families against consanguineous marriages
Year 2014: The journey so far
Of 63 hamlets constituting the Sitteri Village, the team has covered close 48 villages:
- About 1195 men and women have been screened and 19% of them have been found to be Thalassemia carriers. Confirmatory tests are underway. These carriers will be provided counseling
- Around 940 children were screened and 16 were found to be suffering from Thalassemia Major. These children are being provided medication and regular blood transfusions at Chennai
- 5 among the 16 patients have found matching donors. The transplantation for these 5 children will be undertaken during the course of this year
The Way Ahead
The rest of the hamlets in the village are located remotely in the hills. The team plans to cover these hamlets in the due course of time. The other plans include:
- Conducting confirmatory tests on the people found indicative of Thalassemia Minor
- Providing Genetic Counseling for the identified Thalassemia Minor Families
- Compiling a database of Thalassemia Minors in the Community and share with the local Health Authorities and District Health Authorities
- Issuing Genetic Cards to the Carrier Families
- Establishing a Blood Transfusion Unit at Sitteri or Harur that can be supported by the coalition for the next 3 years through training and funds
- Establishing a counseling center for the next 3 years through the help of the coalition for sustaining this momentum that has been achieved because of our continued presence in the Panchayat
- Monitoring our activities and advocate at the level of the local and State Governments to sustain the efforts to make Sitteri Thalassemia- Free in the next 10 years