By Dr Pranita | Research Coordinator
As quoted by Vince Lombardi, "The price of success is hard work, dedication to the job at hand, and the determination that whether we win or lose, we have applied the best of ourselves to the task at hand."
We consider our healthcare work of more than a decade with 100 successful camps as great success and achievement to motivate us to keep going.
Sickle cell disease (SCD) is found in many parts of the world, however common in Europe, United States of America, Middle east and Asia. The inherited disorders of hemoglobin is an emerging global health burden.
SCD in India is mostly found in central part of India and confined to low socio-economic groups namely scheduled castes (SC) scheduled tribes (ST) and other backward communities (OBC). Tribal population groups are more affected. Our organisation Mahrashtra Arogya Mandal(MAM) is working in Satpuda hilly ranges (21.5N, 75E) since last 18 years and have established community control programme center for local tribal groups Bhill and Pawra. We have screened more than 200000 tribal people from this area for sickle cell disorder and now there are more than 3500 sickle cell patient under medical supervision (sickle cell carrier 22.5% and sickle cell sufferer 1.25 %). We provide diagnosis, treatment and counseling facilities free of charge.
Our Extraordinary Finding: Tribal Family of 10 children, 8 sufferers (homozygotes) and 2 carriers (heterozygotes)
In order to find out genotype-phenotype correlation, we extended our screening program towards family studies of index patients. In this study programme, we came across one tribal family where parents are carriers having 10 children, 8 sufferers (homozygotes) and 2 carriers (heterozygotes). All were clinically stable and do not require any transfusion support.All the cases were anaemic with low MCV and were clinically stable without any transfusion support. Mutations analysis was done in five cases. Alpha gene deletion was found in all five cases , which is known for a milder phenotypic presentation.As far as we know this is the large family of 8 homozygous SCD patients and is the largest family in world literature. Dr GR Serjeant, well known scientist in sickle cell anemia field from Jamaica has seen 7 children in one family (as personal communication). Our data also suggest that SCD is more common in this part, which need further is depth studies to have proper intervention.
Now Consider this Statistics for 100 Camps till date:
This work demands extensive support from all over the globe to make it self sustainable.
If you find this intersting please join us and help tribal people with deadly disease of sickle cell anemia.
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By Dr Pranita | Project Leader
By Dr Pranita Joshi Deshmukh | Research Coordinator
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