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In honor of Blindness Awareness Month, I felt compelled to share how blindness and the Foundation Fighting Blindness has affected me personally. Years ago, when I met my father-in-law for the first time, I would have never been able to tell that he is blind. My father-in-law was diagnosed with enhanced s-cone syndrome when he was a college sophomore at the University of Miami in the 1970s. The most determined person I know, he never let his sight dictate his story. As I grew closer with him, I learned that it’s the amazing work and research of the Foundation Fighting Blindness that gives him hope that one day we will cure blindness. 

After attending a few events, I understood how special this organization is and knew it was something I want to be a part of. My goal, along with curing blindness, is to ensure the future of the organization for generations to come. Something amazing about FFB is not only the accessibility services they provide, but also the amount of fundraising dollars that get deployed towards research to find a cure. I’m confident that one day we will get there, and I kindly request that you join me in donating to help us reach our goal. Every dollar is a step towards curing blindness, and brings us hope that one day nobody will have to go through life without their sight.

Hi, I am Sohel Pathan from India. I am 32 years old. I am a computer science graduate and working as an IT professional for the last 11+ years.

Start of vision loss journey with the left eye:

My vision loss story started in the year 2005 when I was just 15 years old. My mother and one of my uncles found me squinting in left eye. We approached an ophthalmologist. The doctor found something more than we had thought. He referred us to some other more experienced doctor. The second doctor diagnosed me having retinal detachment in the left eye and due to that, I was not able to see through the left eye. It was a surprise and shock for me as well as for my family. Until this point, I didn’t notice that I was not able to see through my left eye. The doctor advised me to undergo eye surgery to fix the detached retina. There was an 80%-20% chance for the operation to succeed. The operation was completed but still, after a few weeks there was no improvement observed and it was declared that I am ONE EYED person now. Many people from my family came forward to donate their one eye to me but doctors explained to us that this can’t be possible in my particular case because this is related to a retina, unlike other normal cases where eye donation works. As the doctor said, my right eye is in good condition and advised me to take better care of it, so I encouraged myself and started living normally. Then I completed my schooling, graduated, and started doing a job.

Problems faced after the unsuccessful operation (loss) of left-eye:

After the unsuccessful operation and one-eyed condition, life was a little normal but there were day-to-day different difficulties like couldn’t see some objects instantaneously, being struck with some objects, difficulty in dealing with lesser contrast environment, watering from the left eye in brighter sunlight, couldn’t go in direct sun-light without wearing sun-glasses, severe headache at top-left half part of the head in case of facing brighter light for more time, depth-perception, feeling uncomfortable to uneasy to move around in a room with dim light in day time and night, etc. I was periodically consulting different ophthalmologists about all these difficulties but, “It is because you are having only one eye and you dealing with that only” was the answer. It had seemed reasonable to me as well because god has gifted two eyes. If one of them is not functioning properly then there can be some difficulties compared to two normal functioning eyes.

Shocking news about the right eye:

In the year 2015, I changed the city due to a new job. My vision difficulties were slowly increasing day by day and night by night. That compelled me to consultant a doctor. I searched for local and well-known ophthalmologist in the new city and consulted him. The primary findings were shocking and surprising to me. The doctor diagnosed and suspected it to be a CONE-ROD dystrophy (a gene based disorder in retina) in my right eye, due to which I was losing my spherical vision and having only tunnel/tubular vision. To confirm the suspicious diagnosis and to double check it, he advised me to visit Shankara Nethralaya, a most famous eye institute in India, and I planned a visit to it immediately. At Shankara Nethralaya, after doing all necessary reports like OCT, fundus photo, ERG, Field Analysis etc. they confirmed the suspected CONE-ROD dystrophy. Cone-rod dystrophy (CRD) is a group of inherited eye disorders that affect the light sensitive cells of the retina called the cones and rods. In my case, rod and cone cells were damaged substantially. As doctors said, it is not possible to bring back the lost vision but based on periodic reports, pattern can be identified and action can be taken to prevent the further vision loss or retain the current vision level.   Like other gene based eye disorders, there is no cure for this disorder as well at this point of time. There is a hope for some research and innovation in the field of medical science for the cure of this. I started doing google to learn about the disorder and cure for it and I came across LUXTURNA- a drug to cure gene-based retinal disease, Foundation Fighting Blindness Community and such other information.

Cataract!!! At the age of 30!!!

After the pandemic, in the year 2020, I started experiencing blurred vision. Due to that, I was experiencing more difficulties in routine life and especially computer work. I visited an optometrist and check-up for a change in the glasses number if needed, but it didn’t work and didn’t solve my problem. Though it is far from my current location, to diagnose properly, I again went to Shankara Nethralaya. They diagnosed me with a cataract in my right eye and advised the cataract surgery to overcome all the complaints of blurred vision that I was experiencing for the last 3-4 months. With surprise, I asked the reason for cataracts at this age. So, the doctor said it may be because of steroids that I was having in form of eye drops that were prescribed to get relief from the often watering eye problem in sunlight. The cataract surgery was successful and the blurred vision problem was addressed well. It was a dilemma and a tough decision for me to undergo cataract surgery because I was one eyed person and was able to see through only the right eye and if something went wrong, I might lose vision completely. But with proper support and guidance from the doctor, I could make the decision to undergo cataract surgery. I am really thankful to all the doctors, friends, and family for helping me and making me able to keep seeing the wonderful world and unique creations of GOD.

Lifestyles and experiences during the vision loss journey:

Initially, as a 15-year-old boy, I was cursing on myself that why it happened to me. But over the period of time, I accepted the fact and I believed that God knows better and has chosen me to uniquely distinguish in the world. Everybody sees me as normal but how I can explain to them what vision-related difficulties I am facing? I try to memories the nooks and corners of a place to get familiar with it and feel convenient and comfortable during movement at night. I feel inconvenient to visit an unfamiliar place at night and mostly avoid it to visit. I try to reach my home or a familiar location before night. Due to limited vision acuity, sometimes I don’t aware that someone has extended a hand towards me for a handshake or to offer something. I feel inconvenient and uneasy passing through a crowd and hence mostly I avoid gatherings. Sometimes I can’t notice a pop-up or an alert message in the upper part of a computer screen while my vision is focused on the bottom part of the computer screen. It sometimes makes me feel awkward and sometimes I become a reason of fun while working closely in a team. I started car driving and left it within a very short duration of time as I believed it would not be safe for me to drive a car with vision constraints as it may cause damage to others and to me as well. I drive a motor-bike in the daytime on familiar roads but very rarely at night.

Foundation Fighting Blindness for me:

For me, it is a platform where all folks who suffer from one or another kind of blindness, come in touch with each other, get inspired by stories of others, get motivated, get updates about recent research for retinal diseases. I am following the Foundationfor the last couple of years. I love the tagline of the Foundation that is “Together, we’re winning”.

I appreciate #ShareYourVision October month campaign by the Foundation. I have watched almost all videos of this campaign and learned about the folks like me out there through their vision stories. It really motivated me. It has changed my vision and attitude toward life and I feel more comfortable and don’t feel alone now. Actually, these stories have inspired me to share my story. I would like to thank one and all who are part of this campaign and also part of the Foundation.