Story Gallery

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.

Since my diagnosis at the age of 14 years old, I have learned that life doesn’t need to stop because of my impairment. I will continue to live a full success life. My family noticed at about 3 years old that my vision wasn’t the best. I wore glasses, but only at night did I struggle to walk. They thought it was due to new glasses and the prescription would take time getting used to.

Year after year it was the same, but there was always a night light in my room and hallways for me to get around. After my diagnosis, which at the time didn’t really make sense and only led to total vision loss with no cure. I was still able to play competitive basketball with no issues because what I saw was all I knew. I was that kid that always needed a ride after practice or games because I had no night vision to be able to ever drive on my own.

I have amazing friends and family that have supported me with my impairment. I’m 22 years old now and currently working in sales and still deciding on what my plan is next. Walk by faith, not by sight, is what my grandmother has always told me.

Hello, my name is Tryphena Rhue Taylor, and I am 71 years old. Unfortunately, I have lost my vision completely due to retinitis pigmentosa (RP), an eye disease without treatment and cure. I hope my story will give hope to those persons who are losing their sight to this disease.

My story began Christmas night, 1992. I was visiting my parents along with my family and siblings. There was a house full of people with lots of excitement, laughter, joy and just a good Christmas spirit. Suddenly, the lights went out because the circuits were overloaded. I said to my sister Eleanor, it’s so dark, I can’t even see my hand in front of my face. She said “well, I can see my hand.” This was the first indication that something was terribly wrong with my sight.

When I returned home, I made an appointment and saw an optometrist who dismissed me by saying “You know, when you get old, your vision changes.” I was only 40 years old. I did not accept this answer because I knew there was something wrong, so I sought other medical advice. I had a suspicion that I might have had RP, because I knew a young woman while in college that had lost her night and peripheral vision. I saw two other doctors and received the diagnosis that I did not want to hear. I went to John Hopkins for a third opinion which confirmed that I did have RP. However, the doctor said that I am very fortunate because most people get it in their teens. I told one of my friends of this condition hoping to receive some sympathy from her, but instead she said, “I have diabetes, and I’ve never known anybody to die from just being blind.” I took this statement to heart and made up my mind that I would have a normal life as much I could.

I continued to work as a music teacher in the public school system for 27 years, and private school for 14 years. I currently work in my church’s music ministry. Because RP is a progressive disease, I would say to myself, as long as I can see the light in the refrigerator, I still have some vision left, but one day, I could no longer see the light. This was the beginning of a different way of experiencing life.

I was thankful that I had enough stored memories that I could rely on, to carry out my daily needs. I tell my story to help others, especially teenagers, that blindness won’t prevent you from having a productive life. Before I lost my sight completely, I had a small, personalized note card business that was very successful. I have co-founded and directed a community concert choir since 2005 and have sung for different occasions throughout the state of South Carolina.

Even now with no vision, I have recently written a book “Trip Chicken” for young people which shares my family story of traveling during the Jim Crow era. Through my motivational speaking, I try to encourage others that they can succeed, despite the challenges they may face.

It is crucial to find a cure, and this can only be done through research. When I told my choir I had RP, instead of giving me a financial gift for Christmas, I asked them to donate to the Foundation Fighting Blindness. When my vision started to decline, my sister Sandra would keep me informed of any development in the research for RP, and she continues to do this. It is very important to have a support group from family and friends. I pray that there will be a cure in my lifetime.

Because of my blindness, I have had to give up many things that people take for granted like driving, going to ballet and museums, traveling to different places, just seeing the beauty of nature, and even writing a grocery list that is legible. Even though I have lost some level of independence, I continue to live and experience all that life has to offer, just in a different way.

I have been blessed with twin grandsons who are almost 2 years old. I wish I could see their faces, see them playing with each other, grow up to participate in sports and school activities, and even walk across the stage to graduate. I also wish I could see the faces of new people that I have met, who do not see my disability but as someone who can still contribute to society.

I tell my story to reaffirm that, “I may have lost my sight, but I have never lost my vision.”

My vision story started at the young age of two as my mom noticed that unlike other children my own age, I wasn’t reacting to when she would roll a ball to me when it was nighttime. Being the concerned parent, she took me to the eye doctor, and I was diagnosed with retinitis pigmentosa, or RP for short. Three years later at the age of five, I was then diagnosed with Bardet-Biedl Syndrome Type Ten, though at the time there was only five types of this syndrome and in such, I became a guinea pig via testing at the NIH.

My BBS Type Ten is the reasoning behind why I have my RP, while also my learning delay of two years behind others my own age, being overweight, being born with extra finger on my left hand and extra toes on both feet, and being emotional. The reasoning behind why I couldn’t see at night was because of my night blindness though I only needed to wear glasses that were tented due to my eyes being scentive to lighting to help my vision as I was still able to read ‘normal’ print and only needed my white cane at night and during when it was raining or foggy.

It wasn’t until when I was ten that my vision started to decline. I had to switch to reading in large print when it came to doing my school assignments and reading the textbooks. While my color blindness was starting to become a bit worst, I was unable to see the 3D prints when doing the test at the eye doctor. That's when colors such as yellow and green I can only see one color, plus most dark colors such as, blue, green, purple, and sometimes brown all look black to me.

By my freshmen year of high school, my vision was declining vastly. As my numbers made me legally blind with my left eye being worst then my right, it was getting to the point I was needing to use my cane daily instead of when I needed to. However, due to my mindset, I didn’t want to use my cane all the time due to me thinking that it would take away my independence showcasing to the world that yes, I do have a disability and I am weaker than the able body population. I would bring it with me to school when doing mobility lessons, though it mostly would stay folded up in my backpack unless in that use. It wasn’t until my senior year with a bit of warning talk into me from my mom and my eye doctor about my safety of what could happen if I didn’t use my cane daily. I started to understand the reason behind why they were so hard on my using it and now I feel unable when out and about if I don’t have/using my cane every-time I leave my house.

My vision has mostly been stable for the past year at only 20/700. Though as of last year, my eye doctor informed me that the small cataract that he found from the year beforehand has grown and if I don’t get them removed, I would lose the vision I have completely in a year or two. With being told to me, I decided to get it done right away and got cataract surgery in that September starting with my left eye, since it is the worst of the two. This has made a huge difference as I have gone from struggling to see/focus due it being blurry or foggy all the time and struggling to read the large E when doing my eye exams due to it being blurry and it kept bouncing around. Now I don’t need to blink constantly in order to focus and there is no more fog. I have regained some of my peripheral vision on my left side making it wider as my tunnel vision was closing in more as of lately. And the best part of all is that when doing my eye exam afterwards, I am able to actually read three lines down on the chart.

Though due to me having this disability, I have had a lot of positives. For one I have gone to my community college and have graduated with my associate degree in social work. While at this time, I am working towards finishing and will have my bachelor's degree from a university in social work by the end of this year.

Based on this fast lance program that has worked well for me as I started this BSW program in January of 2022. I am thinking of continuing my schooling through this university and going for my master’s in social work. What I love about this school is that it is fast paced. While being in a small cohort throughout the whole program, I also not only get experience from instructors who have experience in the social work field, while as a student, I also get experience as we are set up with a placement of internship with a site in our community.

My passion is with mental health, behavioral health, and disabilities since I have past experience in all three and want to spread my knowledge with others who don’t know about what is out there for those struggling with this issue while also advocating and spreading the awareness of disabled rights

My name is Noah and I am 4 years old, I have extensive loss of peripheral vision and I also have high myopia. I have just started school and I love it. I don’t let my vision impairment stop me from doing anything. I love my best life.

My journey vision loss began 35 years ago, when I had a macular hemorrhage at the age of 32. It created a macular hole and left me with permanent central vision loss. There was nothing they could do, but my left eye soon took over, and I lived a very normal life.

Nineteen years later, a leak developed in my left eye, and I received injections for fifteen years, although I hemorrhaged in that eye as well nine years ago and underwent a vitrectomy. The atrophy in both eyes escalated dramatically five years ago, and I now have central and peripheral vision loss that is continuing to expand. It is all due to the severe nearsightedness I had most of my life, a condition called myopic macular degeneration.

I became involved with Foundation Fighting Blindness and did the free genetic testing. I wanted to know if there was a genetic link to my vision loss so my sons would know what to expect. In my case, there was no genetic cause, but I am still involved with FFB because I want to help fight blindness for those with inherited conditions. I have a volunteer spirit, so I want to spread the word about what it's like to live with vision loss and share ways to cope as well as information about warning signs and treatments for those with AMD, even though AMD is not my particular diagnosis.

The good news is there is hope for many. I use assistive technologies and other aids to live as normal a life as possible, and I am hopeful the efforts of FFB will result in restoring or preserving sight for millions.

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.

I often don’t speak up about my vision because since my diagnose of Bardet-Biedl syndrome, I was only eleven years old and I had to rediscover myself, I had to learn how to deal with my feelings, insecurities, emotions, fears and accepting my disability. The process is nothing easy, a lot of times you hate having a disability and you just want to be a normal person, but on the end it become a loving and hating relationship. My life turned upside down with the diagnosis even more because I was in another country with another language which I didn’t spoke nothing at the time.

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. 

My eye condition was detected when I was first born. I never knew what it would be like to have full vision, but I did not let that stop me. As I continued to get older, I did a lot of things. I am the first legally blind football player in Delaware. I have been on all media outlets showing how I continue to do a lot of things. I have a book coming out called "The Way I See It". I go and talk to people to let them know they can do anything. I also learned that it will not get better, so I use it as my super power and use it to my best ability.

I also been on the cover of Scholastic Magazine, been named athlete of the month, etc. My nickname is Vision and I also have my own clothing brand called Vision. Please Google me, Isaiah Bingham.

My vision loss story started at the age of 6 years old. From that time until my early 20's, I had low vision that was corrected as much as possible with glasses. At that time, the technology was less advanced and we knew way less. My family will never know why this doctor never thought of sending me to a specialist.

I have always been severely nearsighted in both my eyes. My parents wanting the best for me and loving me, wanted to see if I could be a candidate for lasik surgery. So we saw the specialist and they gave me that look. The look of, we don't know what is wrong with you. They said, my vision was worse than what my childhood eye doctor had diagnosed and had been treating. So they sent me to Boston. I spent a whole day down there. At the end of the day I was told I had myopic macular degeneration and that there was nothing that could.be done to fix it. Imagine how this made me feel? It shattered my heart into pieces. The life I envisioned was gone. How would I to live any semblance of a happy life with this new development?

In the early 2000, there was no such thing as support. There was very little guidance for me and my family. We had to find a way on our own. We did and I am proof of this.

I graduated college with an Associate in Science in Computer Technology. I found a way to leave my hometown where there was no public transportation. I found a job at a hotel and live there for a little while. This job was in a city with transportation. It also had some state agencies that provided me with some resources. With their help I got an apartment and my first full-time temp job. That only lasted a year and I then had to deal with being unemployed for 6 months. During that time, I volunteered at a library and looked for another job. In 2005, I got a job at a grocery store and have been there 19 years. My next step is to find a job in a inclusive work environment doing something that brings me joy and fulfillment.

I share this not to be in the spot light. I just want to be more of a silent advocate. One that educates others with my hard work, by showing up everyday and just living life the best I can. Blindness is a spectrum and I am part of the spectrum!

Why am I raising awareness to our disease?? People don’t understand the struggles of everyday living with blindness!! We no longer can read handwritten items! Grocery shopping is us saying what we want cuz we can’t see the description of items! We can’t set the oven temp without help! We have a hard time plugging items into a plug outlet! We struggle using a measuring cup! We cringe when our young grandchildren ask us to read a book to them. We no longer can recognize faces. We no longer can get in the car and go! We have lost our independence!! We cannot cross the street alone anymore! BUT WE WILL CONTINUE TO SPREAD AWARENESS so that our VISION has a future!!

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 https://donate.fightingblindness.org/ShareYourVision.

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.

When i was first diagnosed with vision loss, I felt alone and scared of my future. Since my diagnosis, I have learned to live my life with deep gratitude and appreciation for life.

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.

Hello, my name is Sakina Purnell. I'm the mother of 3 beautiful children. I'm here to share the short story of my journey.

I was born unaware of this so-called condition, Usher syndrome. I sometimes dragged out by using these terms or shall I say the broken lenses, either way, they both sounded defeated. Growing up thinking I only had hearing loss when I knew I couldn't hear well and was told something wrong with my hearing as a child. I can imagine people thought I was hard-headed not listening! Lol.

Later on, til my teenage years, exactly 15 years old, I was diagnosed with retinitis pigmentomas. Of course, I was clueless and wasn't affected at first after hearing about it, until I did more research and it hit me harder learning of it, but I must had ignore my way of feeling what could have happened to me then.

While living my journey, I did every moment to make it thru it and coping my small struggle here and there. Until after I became a mother, which was the biggest blessing to me despite my condition. I met this wonderful and caring ophthalmologist who taught me a deeper level of the condition and gave me another term called Usher syndrome.

Again, I dragged that one even more dramatically, cuz I thought it came from singer Usher. Crazy if you asked me. Anyway, my journey consists of many emotions, research, different lifestyle, diet, and so much that comes with it. I just keep living my life like I have anything of them cling to me. Life goes on regarding how hard the struggle may be during the bumpy road. Life is still magical on how you make it be. Never give up. I just had to do my best to summarize them so there it is. Sorry for the long post since I said it would. 🫣Thank you for reading.

13 years ago, I was diagnosed with an eye disease known as retinitis pigmentosa. I started noticing slow changes in my night vision and needing others assistance in the dark in the beginning years of high school, around 2001. Then during my senior year, 2003-04, is when I started noticing more of a decline, especially with depth perception and my peripheral vision. It became quite noticeable during volleyball season while that white ball that was once so clear to me had suddenly vanished. But, I just assumed I needed contacts and went about my life.

As time went on, my family began to notice I was a tad clumsier — running into things right in front of me, dropping things and not being able to find them, not being able to walk unassisted in the dark. So, my dad finally said it was time to go to the eye doctor towards the end of summer in 2010. I recall that appointment as if I had just went yesterday. It was Thursday, August 5, 2010, that I walked into an eye appointment thinking I just needed glasses and walked out with a diagnosis that would change my life forever.

After taking the vision field test about 5 times during that appointment and failing it each time, the nurse gave up and in walked the doctor. He took a look inside my eyes and asked if I had ever heard of retinitis pigmentosa. I left that appointment feeling very confused, scared, and alone — not knowing much except what I had googled about the disease. He referred me to a retina specialist at the local hospital who confirmed in November of 2010 that I did in fact have retinitis pigmentosa. I did not know much about the disease at that time, just that it “leads to blindness”, so with my emotions all over the place, I recall many nights of crying in fear of my future.

At that point, I had a 4-year-old daughter and all I could think about was her. I spent years learning more and more about this incurable disease. I traveled to numerous eye institutes around the U.S. in search for hope. I became a mother of 2 in 2012, along with becoming legally blind and having to give up my license and a huge part of my independence.

Fast forward to today, 2023, 13 years later — this disease has taken a lot from me. I have no peripheral vision, I cannot see in dim, low lit areas, total night blindness, photophobia has taken over, so bright lights have become an enemy to my eyes as my light receptors are all damaged and can no longer process the light, and my cones are becoming more damaged causing my vision to be fog-like. I found out at my last appointment in Dallas that my left eye acuity took a major dip in 2 years, going from 20/220 to 20/500 and that my tunnel vision has declined to about 1° which has been very hard to accept some days. I received white mobility cane training through the Lighthouse of Louisiana in hopes to regain some of my independence back, which is a big step and with more practice, is something that will continue to push me out of my comfort zones.

Acceptance is hard. And I can’t say if I’ve honestly accepted this fully. I have really hard days. More often than I let on. Days where my eyes are so tired from straining to see and all I want to do is close them and it all just go away. Days I break down and cry at how unfair life is. The heartache that comes with not knowing if I’ll see my daughters graduate, walk down the aisle, or my grand babies' faces. I’m furious at the things I cannot do — easy things like watching a show/movie on Netflix without needing audio description, going to the bathroom safely during a movie in the theater or at a restaurant, or going to check my sick daughter out of school.

I have days where I ask why me. But. I refuse to feel sorry for myself, not when there are so many out there suffering in real physical pain. The only thing I really want to make aware, is that I would not be where I am today or as strong as I am without my amazing support system. Every single person in my life who has not allowed me to give up and has been there to catch me (literally), even the ones no longer here, they are my heroes. This is not something you can get through alone. It takes help and it takes asking for help and accepting help. It takes teamwork and it takes understating and patience. I continue to be incredibly grateful for the beautiful things I have seen so far in this life and am still able to see every morning that I wake up.

This disease does not define me and it does not get to control my life. Life with RP has been full of tears, bumps, bruises, fear, anger, questions, and uncertainty. But above all of that, it's been 13 years of love, support, guidance, help, strength, bravery, and faith.

My mother was one of five children born to her parents. She and one of her sisters developed RP during childhood and eventually lost all light perception. She never drove a car and could not read or walk my sister and me to the school bus stop. The only treatment available seemed to be vitamin B 12 injections which we’re not effective for her. She was a very proud woman and did not want to broadcast her blindness. She did “read” via recorded books sent to her by the government. She also liked playing cards and was able to do so after she acquired a brail deck, but declined to deal the cards as it might give her an edge. I write this in loving memory and to honor her bravery. My regrets are that she did not live to benefit from the Foundation’s work. Thank you.