Of the world’s 1.3 million blind children, India is home to the world’s largest population, with estimates ranging from 200,000 to 700,000. As in many developing countries, a child born blind faces enormous social and economic hurdles: in addition to being stigmatized and marginalized in their communities, the vast majority of blind children are unable to get an education or a job. Many face physical and sexual abuses. At least half do not survive to adulthood.
In addition to regressive social attitudes, a lack of medical care access, and little to no disability-friendly institutions and infrastructure, the problem is made worse by the pervasive idea that, once a child reaches seven or eight years of age, their blindness is irreversible and untreatable. Yet the prevailing cause — congenital cataracts — is an otherwise easily treatable condition in the developed world. Imagine a lifetime of being disadvantaged and ostracized for something beyond your control and which could easily be addressed if there was the will and money. It is a disease of poverty.
Enter Project Prakash, founded in 2002 by Dr. Pawan Sinha, an Indian-born graduate of MIT. Named after the Sanskrit word for “Light”, he started the organization after a trip to rural India, where he witnessed the first hand the scale and severity of child blindness. After obtaining a grant from the U.S. National Eye Institute, he assembled team of about 20 clinicians, scientists, and outreach personnel to provide cataract surgery for as little as $300 per patient (though those too poor to pay get it for free). He tells the story in great detail Scientific American (sorry for the paywall.)
Here’s a 2014 post about it in the DNA Science Blog:
Project Prakash is “a joint scientific and humanitarian effort.“ The humanitarian part is obvious. The scientific gain is in following a unique pediatric cohort who can reveal how a visually naïve brain begins to process and integrate images. Such research is typically done in infants, who can’t communicate what they’re seeing in a way that an 8 or 12 year old can. The oldest patients are in their twenties.
The participants in Project Prakash are challenging a long-held idea: that age of 7 or 8 is the upper limit beyond which a brain attached to sightless eyes can no longer become able to see. But the project has shown clearly that even a person who hasn’t seen for 15 to 20 years, since birth, can begin to make more visual sense of the world.
The investigations include behavioral observations, such as visual acuity and facial recognition, as well as non-invasive brain imaging to follow responses of the cortex to new visual information. The researchers used iPads to test contrast sensitivity.
Becoming able to see after removal of congenital cataracts is profound, but not instantaneous. At first, a newly-sighted person sees vague parts of a scene that, just shapes, that over time come into focus. By six months, shapes corresponding to different colors begin to emerge. “Our results show remarkable plasticity and vision continues to improve in many children long after the surgery,” said Peter J. Bex, PhD, a member of the Prakash team from the Schepens Eye Research Institute.
As of 2017, over 45,000 children have been screened, with around 2,000 treated either surgically or nonsurgically. The project has also engaged in outreach campaigns to make people aware of the treatment options available. Though a drop in the bucket compared to the sheer amount of need, it is an impressive number given the handful of personnel that make up the project. The results will also inform similar treatments elsewhere, giving hope to the 20 million people worldwide who are blind and deal with the attending stigma and deprivation. (Concurrently, attitudes and policies towards those with disabilities should change as well.)
To further advance their efforts, Project Prakash plans to establish a state of the art center that will not only provide treatment to blind children, but will help rehabilitate and educate them to correct years of neglect and deprivation. It will also include scientific research facilities to continue finding better and more effective cures.
Learn more about this amazing project, and if possible give your support, here.