Retinitis Pigmentosa (R.P. as it is commonly known in the medical
language) is a condition that results in gradual vision loss. Persons
having this condition could become totally blind or significantly
visually impaired. In India, where marriages within close family
circles are quite common (one of the reasons suspected for its high
prevalence), R.P. is said to affect as many as one in 300. Without
statistics or proper prevalence study, we don’t exactly find out if
that estimation by some doctors is correct or if we are
under-estimating the numbers. Patients with R.P. such as myself,
usually live within the confines of home not sure of their vision
condition and generally feeling dreadful about moving around on their
own. Since the on-set of this genetic condition could happen virtually
any time in ones life, we have people of different ages suffering from
it, from 12 year old to 67 year old (among the patients counselled by
a small group of patients who want to help their fellow sufferers).
Life usually ends to hold any meaning for these patients. Those young
follow their family into finding cures that are not available and
don’t exist anywhere in the world and those old enough have to bid
farewell to their career aspirations and remain at home. Some realise
that technology can make a difference (as it has done in the cases of
members of the patient group who work and lead a normal life), but
they are not convinced that it would be possible in a society where
descrimination on the basis of ones disability is quite common. So far
the patients have to suffer in the silence of their hearts and within
the four walls of their homes. Thanks to the disconnect between health
and NGO sectors in vision related areas, we don’t have a system to
allow people affected with R.P. and other related, and no less
dangerous, retinal diseases to bounce back and continue to live as
dignified and respected individuals. In order to take the issues
caused by R.P. to the wider public forum, beyond the small network of
patients and doctors, I have written a book that describes the six
months of my slow descent into blindness that happened when I was 17.
“Lights Out” is an account of an R.P. patient and how badly it
impacted his family. It is published by Random House and is available
in all important online retailers and also in stores like Landmark,
Crossword and other places in Indian cities. Through this book, I feel
it would be possible for the network of patients to raise awareness
and help create a system that would ensure patients don’t hurt inside
and remained confined to their homes, but learn to get back on their
feet quickly, continue their career pursuits or look for alternatives.
They need to find meaning in their lives.