Story Gallery

From her mother:

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.

I wish Serena could see our smiling faces, but at least she can see some lights in the dark. A challenge with blindness is any time there is a loud noise or someone touches her without speaking first, she is startled.

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.

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.

I have been diagnosed with RP when I was 12 years old. I have ups and downs since. I am getting better accepting help if needed and have adapted with the new and great technology created within the past few years.

From her mother:

October is Blindness Awareness Month. I thought I’d share a little about Amelia’s vision loss, which began when she was about 18 months old.

When Amelia was around 18 months old, we noticed she wasn’t making eye contact as much anymore and she was tilting her head back when looking at things. We thought it was just a silly quirk and laughed about it. But then she began over-reaching for items in front of her. She’d reach for the bowl on her highchair tray and miss. Or she’d sweep her hand across the plate to pick up a piece of food. Initially, we thought she might have a cortical visual impairment. We engaged her with high-contrast books and toys, and made an appointment with the eye doctor to be sure. In the time it took for her appointment with the pediatric ophthalmologist, she began looking at things out of the corners of her eyes and was struggling with fine and gross motor skills as well. The ophthalmologist found that her retinas looked normal, but her optic nerves did not. They were discolored and atrophied. This discovery, along with other symptoms she was experiencing, lead to Amelia needing an MRI. At 24 months old, she was diagnosed with CLN1 Batten disease, a rare, fatal, neurodegenerative disease which takes a child’s vision, speech, cognition, and motor skills. It also causes seizures, dysphagia, and dystonia. She was completely blind by the age of 3.

I can’t even imagine what it’s like for Amelia to be without vision. At this point in her disease, she doesn’t know any different and she doesn’t remember being able to see the world around her. She’s been blind for 5 years now, and is such a brave little girl. We do a lot of exploring in the community, finding accessible parks and trails to enjoy. Our goal is to find ways for Amelia to enjoy and experience the world, even without her vision.

In honor of Blindness Awareness Month this October, I thought I would put my story out there in hopes that someone with a similar condition feels a connection.

My story actually began when I was 6 and I got my first pair of hearing aids. Later on, I eventually lost all my hearing and got cochlear implants in high school. In November 2024, I made an appointment with my strabismus specialist because I felt like it was harder to see distance, and I also mentioned having trouble seeing in the dark and seeing floaters as well as feeling more sensitive to light. My doctor did a few tests, and referred me to a retinal specialist telling me she thought I had retinal dystrophy. Fast forward a few months, in the spring of 2025 I finally got my genetic tests back. I have PHARC Syndrome, which stands for Polyneuropathy, hearing loss, ataxia, retinitis pigmentosa, and cataracts. This is a very rare condition and curiously, very similar to Usher syndrome, which is what they thought I had at one point. Since my diagnosis is still pretty new, my life hasn’t changed much yet. I can still drive under 45 mph, and I use magnifying glasses and increased the font on the computer. At night, my husband takes my arm and guides me. Over the summer, I’ve been going to low vision occupational therapy, physical therapy (to work on balance due to ataxia) all to learn more and improve whatever I could control! My husband and I are slowly trying to add more light and contrast to our home.

My name is Esma, I am 40 years old, originally from Pakistan and now living in the U.S. A few years ago, I was diagnosed with CNGB1-related retinitis pigmentosa, a rare inherited eye condition. At first, it was just trouble seeing at night, but slowly my vision has been narrowing. Now, daily tasks that once felt simple—like reading my children bedtime stories or walking confidently outside—have become real challenges. I lost my driving license.

The emotional side of vision loss has been as hard as the physical. Losing independence is painful, and it has sometimes made me feel isolated and afraid of the future. But my children, my faith, and the hope of ongoing research give me strength to keep going.

I am sharing my story because I want others with vision loss to know they are not alone. And I also want to encourage more awareness and support for research, so that one day families like mine can have hope for treatments and cures. Thank you, Foundation Fighting Blindness, for giving people like me a place to share our voices. Together, we can turn struggle into strength and push forward for a brighter future

In honor of blindness awareness month this October, I have finally decided to share my story with family and friends. Many of you do not know that I live with a retinal disease that has begun to slowly affect my vision.

My vision loss is due to an unidentified gene. Last year I was diagnosed with retinitis pigmentosa, an inherited retinal disease that causes night blindness, loss of peripheral vision, and for many eventually total blindness. Growing up I never had any vision issues and no knowledge of any family member having an inherited retinal disease, so my diagnosis came as quite a shock. In the past year, through many doctors appointments and countless tests, I have learned that I have mild loss of peripheral vision and severe night blindness. Today, however I have realized just how fortunate I am. I don’t speak up about my vision loss because it is currently mild and has not brought on much change to my daily life, but my future is uncertain. I am hopeful its progression will continue to be slow, but I also want to prepare for these changes that are to come. In the meantime, I have chosen to use my disability as an “ability” to advocate for others, bring awareness to fund clinical trials for treatments, and help those who are severely impacted by blindness live their lives to the fullest.

Foundation Fighting Blindness is paving the way and on the forefront of finding treatments and cures for inherited retinal disease like mine. With the science outpacing the funds, it is critical that we continue to support the Foundation’s mission to keep pathbreaking research moving forward. Join the cause. Please donate at https://donate.FightingBlindness.org/ShareYourVision.

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.

My vision loss is due to Stargardt disease, an inherited form of macular degeneration, which causes decreased central vision loss.

When I was first diagnosed with vision loss, I felt hopeless and unsure of what my future would look like. As the years went by, I learned a lot about my visual impairment and learned that I can still do anything I want even if the path to get there is different. My outlook on life changed for the better, and thrives me to push for success. I learned that it is okay to ask for help when needed and to spread awareness about visual impairment.

Foundation Fighting Blindness is paving the way and on the forefront of finding treatments and cures for inherited retinal disease like mine. With the science outpacing the funds, it is critical that we continue to support the Foundation’s mission to keep pathbreaking research moving forward. Join the cause. Please donate at https://donate.FightingBlindness.org/ShareYourVision.

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.

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.

My greatest challenge with vision loss has been learning how to ask for help and not being able to do everything myself at 57. It's like a whole new learning experience.

Foundation Fighting Blindness is paving the way and on the forefront of finding treatments and cures for inherited retinal disease like mine. With the science outpacing the funds, it is critical that we continue to support the Foundation’s mission to keep pathbreaking research moving forward. Join the cause. Please donate at https://donate.FightingBlindness.org/ShareYourVision.

I feel the importance of sharing my story of vision loss for two reasons. The first is to inspire others with vision loss, and we don't need sight to look forward to accomplishing our visions. Secondly, to remind people that the cause of my vision loss is a deadly disease that still exists and can threaten the loss of sight.

My vision loss is due to Cytomegalovirus (CMV) retinitis acquired by HIV/AIDS.

In 2016, I became legally blind. After living with only one eye for the past 28 years, I lost my battle with CMV retinitis. I am a 65-year-old AIDS survivor. Once I was diagnosed with AIDS (acquired immune deficiency syndrome), CMV retinitis immediately blinded my right. I began my new lease on life by leaving Chicago for warmer weather and made San Diego my home. With the thought of losing so many friends to AIDS and being the only survivor of the group, I knew I had to prove and be grateful. I had just turned 40 and set goals for myself to accomplish by my 50th birthday. My first goal, as a personal achievement, was to return to school and work on my college degree. As a double win, It was a great gift to my parents for their upcoming 50th Wedding anniversary in 3 years' time. My mother's dream has always been for all six children to receive a college degree, but I was the only outcast. I attended classes in the evening as I interned for an attorney during the day. All through this time of interning and going to school, I also faced some medical challenges that I had to fit in with my everyday life. Even though I still had vision in my left eye, I constantly dealt with various eye issues and surgeries with CMV retinitis. I also started developing avascular narcosis in my joints, which caused me to have my first hip replacement. Shuffling school, interning, and medical surgeries and treatments, I started to see the light at the end of the tunnel with school when doctors disclosed an immediate retinal detachment surgery I desperately needed to save my left eye. With only three classes left to graduate, I went under the knife and came out with a successful operation, but I was temporarily blind because of a gas bubble in my left eye needed to heal the retina. Everyone around me felt sorry for me, thinking of me having to put school and interning aside until I could have used my left eye. Well, I refused to stop the filming and found ways to keep the show running. With the help of the ADA compliance office of the school, I was able to receive the assistance I needed to complete my classes and graduate with my class. I graduated in December 2004 and made it to my parent's 50th-anniversary party the following February, Valentine's Day. As for interning, I was assigned an assistant to help me throughout the day. It took about five months for my vision in my left eye to return. Since then, I have moved on from interning to helping my now husband start a Real Estate business. As the medical issues continued throughout the following years, I returned to school to become a Real Estate Broker to work with my husband and enjoy the business and not let medical issues hold me back.

As of today, I have had 12 eye surgeries, four hip replacements, and three shoulder replacements, and I am now legally blind. Nine years ago, I lost the ball with CMV retinitis and the vision in my left eye. Becoming legally blind severed my independence and was the hardest medical challenge I faced. Not having any other choice, my love for living helped me not to surrender my mind to the negativity that others perceived of my blindness. I researched resources available to me and found the San Diego Center for the Blind. There, they taught me to navigate independently around my personal and professional life. I always say to find the good in any bad situation, and that will keep you healthy and focused. The good in my life that help me so much are my husband, family, and friends. Even the kindness of strangers. I couldn't be happier with my life as I am today because I know my love for life is inspiring and motivating. We don't need sight to see the light at the end of the tunnel. We don't need sight to look forward to our visions in life.

I am writing my vision story because now i found out about this page, where i can share my point of view. I have seen many videos with people with various sight diseases and it always makes me feel better, knowing that other people go through the same difficulties as me and try to have a normal life.

My vision loss is due to when I was diagnosed around 22 years old, when i started having the first signs. Now, I am 32 years old and my condition is worse. I have a functional eye and I can work by wearing a low vision equipment but I cannot drive anymore and I have trouble recognizing faces.

For me, vision loss has completely changed my life, in many ways. Before I was diagnosed I had a life full of activities and memories that I built on my own. I started driving when I was 18 so I was independent and free to go anywhere. Not being able to drive anymore, is like not being able to do what I really want. Of course I use the subway or a bus, but nowadays it is not convenient or safe. Also, I used to work at bars and restaurants, so I had a pretty exciting social life, which I can't anymore, by not being able to recognize faces. There have been many awkward moments when someone passes by me or waves me and I don't see them, so if I don't explain the reason for that, most people think I am rude or a snob. At first, I felt very bad for what people think, but now I have realized that it is something that I cannot change, so worrying about it will not make me feel any better. Another huge part of my life is working with Stargardt disease. For the last years, I used to work at a company with all day computer use, where I used a special low vision equipment (it is the one I am wearing now in order to write this story). It is like glasses with one extra part that zooms in and out from the monitor, kind of like a camera, and gives a clearer view of letters. The hard part is not only the practical one, where my eyes get tired by wearing the glasses all day, but mostly the social one. People look at you as if you are different than them, but not in a bad way. It was very weird for me, but I always felt better when I talked about it and others could understand what is going on. I had to work twice as hard as my other colleagues to achieve something that for them was very easy. However, I have no words to describe how good I felt every time I had an achievement. Not only I worked like others, but I also got promoted and earned so much experience on my job. There are many times when I am in a bad mood because I think of Ii could be and how in fact I am. I cannot help thinking how my life would have continued if I was ''normal'' and I didn't have to quit driving and I could still read and I didn't have to explain to people what is happening. But there are other times when I feel so proud of myself and so grateful of what I have done so far. I may not be able to do some things, but for those I can, I feel so alive. I know I am not ''normal'' and this is something that makes me special and I no longer try to prove that I am ''normal''. Having this disease has put me out my comfort zone (a lot!), and it is frightening, but the best way to deal with it is to get even more out my comfort zone and create new experiences an memories for me.

So far, there is no cure for Stargardt disease. Until there is, I hope all people with low vision are able to continue having a happy life. If we take some things less seriously and life a funny side, everything is better. We must trust science and always visit our doctor regularly but mostly we must never forget that life is a challenge and we must live it!

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