Share Your Vision Stories

Sohel Pathan

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.

Caryn Steine

Hey, my name is Caryn Steine. I have glaucoma and legally blind since birth. I have light sensitivity to sunlight and bright lights.

My vision loss is due to Best disease, which causes macular degeneration and the loss of central vision, visual acuity and color perception.

I would be deeply grateful should you consider making a donation to fund pathbreaking research to treat and cure blinding retinal diseases like mine. Please give to Foundation Fighting Blindness to advance this important mission.

Daniel Smars

In honor of Blindness Awareness Month this October, I wanted to share my story of vision loss. Feel free to share this with others to help raise awareness about blinding retinal diseases.

My vision loss is due to choroideremia, which causes progressive vision loss, starting with the peripheral vision and later progressing to the central vision.

Hi, my name is Dan. I’m 59 years old, married, a stepdad and grandpa. I’m the oldest of 4 kids and the only one diagnosed with a retinal disease, which at my age is now almost complete blindness. I was originally diagnosed with retinitis pigmentosa when I was 12 years old. My parents noticed that I had difficulty seeing in dark rooms and, after becoming up close and personal with several of the trees in our neighborhood while playing “Kick the Can” at night, it was decided to have my eyes checked. That is when the diagnosis was made.

This diagnosis of mine also explained a few things for my maternal uncle who, as a young man had also shown many of the symptoms I was just discovering. There wasn’t much that needed to be done at that point. There wasn’t much that could be done. Aside from the night blindness my vision was not affected (except for the near sightedness I had inherited from my dad, easily corrected with glasses and later contact lenses). I did join a group called BOLD (Blind Outdoor Leisure Development) and among other recreational activities they offered, I took part in downhill skiing. Being young and fearless (aka “stupid”) at that time, I became an enthusiastic downhill skier. After I learned how to control my “enthusiasm”, I became a good skier, competing in and sometimes winning competitive races. Although I had no appreciable loss in my visual field at that time, I was still required to wear a bib proclaiming “Blind Skier” outside my jacket while skiing. This fact produced some very astonished faces in the lift line. Other skiers, waiting patiently in line for the chairlift, would sometimes get glimpses of the 16-year old version of me, tearing down the hill in perfectly controlled turns, wearing a bib that announced “Blind Skier” until I reached the bottom of the hill, whereupon I circled widely around the chairlift, kicked the backs of my skis and sent a huge swish tail of snow into the air before coming to a completely controlled stop at the end of the line. I tried to keep a straight face as I imagined others thinking “Wow, blind people can do anything!”

During my 20’s and 30’s, my life was barely affected by my vision loss. The night blindness was still the only noticeable concern. Although I had no appreciable loss to my peripheral visual field, I knew at some point this would happen. With that in mind I decided not to renew my driver’s license when it expired on my 25th birthday. I reasoned that it would be much easier to give up driving after only 10 years rather than driving for 30 years and being forced to give it up. The only other change during this time was my diagnosis. My ophthalmologist told me he had some good news and some bad news. “What’s the good news?” I asked. “You do not have retinitis pigmentosa,” he said. “What’s the bad news?” I asked. “You have choroideremia“ he said. It was explained that this produces the same results as retinitis pigmentosa, it’s just a little different. “Great,” I thought to myself. “I just learned how to spell retinitis pigmentosa, now I have to learn how to spell choroideremia!”

Throughout all this time I continued to play music, singing and playing guitar in local rock bands. In 2007, I joined a Celtic rock band, a genre unfamiliar to me. It was fortunate that I did. I would never had met my wife without it. By this time, I was in my mid to late 40’s and my visual loss was now noticeable. I began using the white cane to aid in mobility. I was fortunate enough to have bandmates I could rely on for help on and off the stage. Usually. Sometimes they were too busy to notice me standing there, waiting to exit the stage. This worked out well for me the night we played in Lafayette, Indiana after releasing our one and only album. Michelle, the woman destined to become the love of my life, saw me standing on the edge of the stage after our first set. The guys were busy putting away their instruments so she asked me if I needed help leaving the stage. I said “Yep.” She helped me down the stairs and we went outside for a smoke. We became friends on social media after that weekend, began calling each other every night and I was in love with her before we’d even had our first official date. We dated long distance for a year (one month she would drive up from Indiana or the next month I’d take a bus down to see her) and a year later we were married, in the same Irish pub where we’d met. Michelle is the type of woman who will not allow me to say I can’t do something because of my vision loss (I sometimes suspect this has something to do with the life insurance, but she assures me this isn’t the case).

One year when my band was playing at the Wisconsin Scottish Highland Games, she and I were walking around the grounds in between my band’s sets. She asked me what I wanted to do and, as a joke, I said “How about archery?” She said “Ok, let’s go!” We went to the archery exhibit, spoke to the instructor and he said “Let’s give it a try.” He rigged up a stand for me to balance my bow hand on, lined me up after explaining how to properly hold the bow and I released the arrow. I hit the target 4 out of 5 times. From this impromptu beginning, a blind archery program sprang up. Michelle became a certified archery instructor and has assisted in the last 3 blind archery competitions we’ve had at the Scottish Highland Games.

I am nearly completely blind at this point. I can see some light and shadow but no details. I can no longer see my wife’s face but I was able to see her on the day we got married. So, I still have that mental image of my wife on our wedding day and carry that beautiful image with me.

I became a grandfather a few years ago. My stepdaughter, whom I love as if she were of my own blood, gave birth to a baby boy in June of 2019. I love that little guy but I have no firsthand idea of what he looks like, only the description given to me by others.

My life is happy and full. I still play music with my band, I am still gainfully employed and I still do my creative writing and still write songs. I would still, however, love to see what my grandson looks like and the expression on his face when he calls me goofy.

The cure for blinding retinal diseases like the one I have is right around the corner! The science is here. All that’s lacking is the funding. I believe that Foundation Fighting Blindness is at the forefront of this hope. If you are able to donate to Foundation Fighting Blindness in my honor as part of #ShareYourVision, please visit the site.

Deborah Garcia

In honor of Blindness Awareness Month this October, I wanted to share my story of vision loss. Feel free to share this with others to help raise awareness about blinding retinal diseases.

My vision loss is due to retinitis pigmentosa (RP), which causes decreased vision in low light as well as the loss of side vision, also known as tunnel vision.

Laurie Benzine

I would like to share my daughter's vision with you because some of you may not realize that she lives with a retinal disease that impairs her vision. Since October is Blindness Awareness Month hopefully you will help me spread the word to raise awareness.

Her vision loss is due to Usher syndrome, which not only causes night-blindness and a loss of peripheral vision, but hearing loss and balance issues as well.

I would be deeply grateful should you consider making a donation to fund pathbreaking research to treat and cure blinding retinal diseases like Jill’s. Please give to Foundation Fighting Blindness to advance this important mission.

Jen Kennedy

I've decided to share my vision with friends and family this October in honor of Blindness Awareness Month, because I believe it is important to raise awareness about blinding retinal diseases.

My vision loss is due to Doynes Honeycomb Macular Dystrophy/ Malattia Leventinese.

My greatest challenge with vision loss has been losing my independence. The second greatest challenge has been the loss of my ability to read easily and for pleasure. I’ve known since I was 19 that my vision would steadily get worse but it’s still hardest to lose the last vestige of independence that I had…driving myself and my family places. For the last five years I’ve referred to it as my “incredible shrinking world”. But the only thing that has shrank is my ability to see well. Being in a very rural area it’s tough to not be able to drive and have to ask people for rides everywhere. The reality is it makes you want to give up so you don’t become a “bother” to others lives.

I know there is no cure for my type of retinal disease due to its extreme rarity. But there are so many other more common blinding retinal diseases that have a chance for a cure. Maybe, just maybe there will accidentally be a cure for my type of blinding disease. If you feel moved, please donate. Thank you.

Toni Mattox

I've decided to share my vision journey with friends and family this October 2022, in honor of Blindness Awareness Month because I believe it is important to raise awareness about blinding diseases and conditions. And this includes causing total blindness, legal blindness, or low vision.

My vision loss is due to I am legally blind in my right eye due to a congenital cataract removal in infancy that caused aphakia and aniridia. And as of May 2022, my retina started to deteriorate. This is leading to more progressive vision loss, robbing me of all remaining peripheral and central vision.

I have been legally blind in one eye since birth. Some people don't believe that losing more vision is affecting my quality of life and limiting some of my activities. But since my diagnosis, I have learned that a lot of people just didn't understand what I have been living with all my life. For example, I have to wear sunglasses due to light sensitivity and I am often in pain and discomfort, etc. For me, vision loss means finding a new way to be independent despite my new limitations. My greatest challenge with more vision loss has been admitting that I need to use a white cane. I was ashamed and it was embarrassing at first, but I am slowly getting over that. My congenital glaucoma is gone, but now choroidal effusion is causing an abnormal accumulation of fluid in the retina in my right eye. It's a common complication of glaucoma surgery. Which is why I don't want to have any more surgeries without serious consideration. Thankfully, I've finally found the right group of physicians who communicate well and agree with less invasive treatments.

I would be deeply grateful if you would check out the site and the pathbreaking research to treat, prevent, and cure blindness. And if you feel moved, please give to Foundation Fighting Blindness to advance this important mission. #ShareYourVision

Amanda Koegler

This Blindness Awareness Month I have decided to share my son’s story. It’s my mission to bring awareness to his conditions and help others learn that blindness is a spectrum.

His vision loss is due to Septo-Optic Dysplasia, colobomas, micropthalmia, and nystagmus.

Our son’s visual impairments have taught us so much about the spectrum of blindness and we strive to teach others as well. He’s been a huge inspiration to our family, friends and community at only two years old. He lacks depth perception and his colobomas (essentially holes in his eyes) give him visual field loss so he’s also a white cane user. His Septo-Optic Dysplasia means his optic nerves are underdeveloped and it also affects his pituitary gland. Most people look at our son and don’t notice his visual impairments. They question why he uses a cane. They make comments like “well it seems like he can see SOMETHING.” I think it’s important for others to know that blindness isn’t always seeing nothing and that white canes have many uses.

Although his particular visual impairments can’t be cured, it’s very important to us that we raise awareness about blindness. We are thankful for organizations like Foundation Fighting Blindness that help make this happen.

Pam Harris

My greatest challenge with vision loss has been the loss of independence. I live in a town of about 10,000, and we have no public transportation or an Uber service. While vision loss is challenging in multiple ways, I have adapted to my situation and learned techniques and purchased assistive technologies to help me navigate. Bu as a very healthy, active woman, I struggle with being at my own home most of the time and unable to work anymore, unable to socialize as I would like, unable to drive to see my son's family two hours away. Friends and family help, but I hate asking people to take me places. It is still a work in progress. I hope my children and grandchildren do not have to cope with vision loss someday, which is why I'm spreading the word about Foundation Fighting Blindness.

Andrew Roth

In honor of Blindness Awareness Month this October, I wanted to share my story of vision loss. Feel free to share this with others to help raise awareness about blinding retinal diseases.

My vision loss is due to Stargardt Disease, an inherited form of Macular Degeneration, which causes decreased central vision loss.

I was diagnosed with Stargardt disease in my early 20's. I attended college, battling the heavy reading workload, but grateful when I found help at the University office for handicapped students. Completing my degree in English LIt and a supplemental degree in American History, I started teaching. Although extremely challenging to work with junior high students, I loved it and found that my vision loss helped increase my memory retention. I could recite history facts from the text with little difficulty, although grading papers proved challenging. With the assistance of teacher aids, I overcame that obstacle. However, after 22 years in the classroom, I eventually felt compelled to give it up, no longer able to recognize student's faces. Lost without a purpose, depressed with so much time on my hands, I felt greatly encouraged by my family to begin writing. Everyone said they enjoyed my history stories, so I began writing Christian historical fiction. I purchased Zoontext for my computer and a large key keypad. Wow, what a struggle! But, slowly, I managed to write a book. Then another. I attended writer's conferences with my wife and pitched my books to agents and publishers. A few years passed without a contract offer, but I didn't give up, and I wrote more books. Finally, I landed a contract with Elk Lake Publishing Inc. Now I have 6 books published, a 7th to be released in the spring of 2023. See my progress at andrewrothbooks.com I am so grateful to the blind and visually impaired people who inspire me to stay in the game, never give up, and encourage others to do the same. Life is still to be lived, even with vision loss, although it is more difficult. Stay active, find something to do, somewhere to serve, and live!

Mariana Fernandez

In honor of Blindness Awareness Month this October, I wanted to share my story of vision loss. Feel free to share this with others to help raise awareness about blinding retinal diseases.

My vision loss is due to Bardet-Biedl Syndrome which causes progressive loss of night and peripheral vision from retinitis pigmentosa.

I never imagined moving to a country, speaking another language or having a degenerate disease that affects the vision. When I was eleven years old I was diagnosed with Bardet-Biedl syndrome and my life changed in a snap of fingers. I was born in Brazil and the doctors always told me that what I had was astigmatism and myopia but I never understood the reason why the glasses prescriptions were changing in a small period of time until the real reason appeared. Since I was diagnosed I’ve lost my night vision and a lot of my peripheral vision too. I have to confess that isn’t easy a diagnosis like this, my head was a mess with so many questions and thoughts that was throw in my lap with my new reality and I had to face it wanting or not, with or without fears and with all the questions and thoughts that were answered later within time. I like to say that I have a case of hating loving my disability, a lot of times I hate for making a simple thing become much more complicated but I love that it showed me how strong and brave I can be also it showed me a different world and I realized that I’m unique and stopped worrying about the judgments and started to focus what makes me happy. If you asked the Mariana from today what changed since that eleven year old girl? Well I would say that like a butterfly she had her metamorphosis, she had to rediscover herself, change herself and know more about herself to realize that living with Bardet-Biedl syndrome is perfectly imperfectly.

Sue Mercer

In honor of Blindness Awareness Month this October, I wanted to share my story of vision loss. Feel free to share this with others to help raise awareness about blinding retinal diseases.

My vision loss is due to Coloboma of optic nerve – optic nerve connects brain to the eye. Optic nerve not developed properly.

I often don’t speak up about my vision impairment because as a child I was bullied and often made to feel inadequate. In addition to severely impaired vision, I wore very unattractive, thick glasses which only partially corrected my vision. I experienced serious anxiety and depression and was referred to a support group organized by Spectrios Institute for Low Vision. They were a godsend. In addition to meeting other people with similar problems and learning coping mechanisms, I attended classes at Spectrios which taught me ways to maximize my existing vision. They introduced me to the latest technology for accessibility. Technology has opened so many doors for me and I encourage people who are blind or visually impaired to learn as much as they can to make technology work for them.

Mari Ruiz

I've decided to share my vision with friends and family this October in honor of Blindness Awareness Month, because I believe it is important to raise awareness about blinding retinal diseases.

My vision loss is due to retinitis pigmentosa (RP), which causes decreased vision in low light as well as the loss of side vision, also known as tunnel vision.

For me, blindness is hard for others to understand why I use a white cane when I’m alone in public. When others see you outside with a cane, they assume you are completely blind not necessarily true. Blindness has many degrees of how you can see. People never understand, no matter how you explain your blindness when you have RP.

Kim Baker

In honor of Blindness Awareness Month this October, I wanted to share my story of vision loss. Feel free to share this with others to help raise awareness about blinding retinal diseases.

My vision loss is due to retinitis pigmentosa (RP), which causes decreased vision in low light as well as the loss of side vision, also known as tunnel vision.

In Spring of 2018, I noticed that I couldn’t see in low light at all. After several doctor appts, I was diagnosed with retinitis pigmentosa in October of 2018. I was told it leads to blindness and 4 years later, I’m still trying to process the fact that I’m going blind. So far, it’s slowly progressing. I have night blindness so no driving at night. And I know my peripheral vision is starting to get a little smaller. I bump into people and things from time to time. Being in crowds is overwhelming to me now. On days when I’m really tired, my eyes can be a little blurry. Overall, I still have a lot of vision right now so I’m grateful. I’m scared and I’m mad at the same time about having this eye disease. But I’m also so thankful that I can see my beautiful baby girl’s face. I know I’ll have a lot of support along the way as the disease progresses.

Dyllis Wells

I would like to share my vision with you because some of you may not realize that I live with a retinal disease that impairs my vision. Since October is Blindness Awareness Month hopefully you will help me spread the word to raise awareness.

I was first diagnosed with a retinal disease in 2022 at the age of 68. My vision loss is due to Macular Degeneration, one of the most common forms of vision loss, which causes blurred or reduced vision as a result of thinning of the macula. When I was first diagnosed with vision loss I felt. lost and very upset . I did many hours of research to try to understand the implications for the future. I was chosen to go on a trial Of eye drops which improved my eyesight by 4 lines on the eyechart but the Pfizer trial was abandoned. I then had regular Lucentis injections in both eyes ( I had the wet form of AMD). This made my eyesight worse. I tried acupuncture but that didn’t work and I had marrow bone stem cells injected into both eyes. Since I knew I was losing my eyesight I concentrated on the power of the mind to heal. I constantly told myself that I could see and that my eyesight had improved. I had a miniature telescope implanted into my right eye in a London clinic, it does magnify but I still have blurred vision. I believe sincerely that through constantly implanting suggestions into my mind that my vision had improved that today, I still have good peripheral vision and I am able to cook, shop, play regular golf at a good level and do most things other than drive and see faces , unless they are very close to me.

I hope you will stay positive as I do and use your mind to convince yourself that you can see clearly. I use my iPhone and iPad to enlarge print, I use tv glasses to improve quality of television programs. I have tried all the new technology for improved vision but none were usual to me as they are too restrictive, too heavy and too restrictive.

I hope my story will inspire you to be hopeful and to trust your mind to help improve your vision.