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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.

In honor of October Blindness Awareness Month, I will be participating in the Foundation Fighting Blindness’ #ShareYourVision campaign.  My vision story began at birth (December 1988), and shortly after, when my family suspected that I may not have been able to see.  By 8 weeks old, I was diagnosed with a broad condition, “Disease of the Retina.”  A few weeks after, I was prescribed glasses, and I underwent months of screenings and tests to determine the underlying cause of my rare vision condition.  Unfortunately, there were no answers provided to my family at that time.

As I continued to grow, I lived my life as “normal” as possible.  I attended public school and participated as an academic student with minimal accommodations.  From Kindergarten through college, I resisted any type of assistive technology because I desired to be like all of my peers.  During my K-12 education, I attended rural schools.  I was the only student with a visual impairment in my school, which caused me to feel very isolated at times.  I had many friends during school; however, they came at the cost of me avoiding and accepting who I really was.  I played varsity sports, participated in various clubs/extra-curricular activities, and achieved honor role grades during my K-12 education.  I was determined to “fit in” despite my limitations.

When I was 16, I wanted to learn more about my vision.  So, I gained a second opinion from a doctor who told me that I would be blind by my early 20’s, and if I ever had children, they would be blind as well.  This was not quite the news I had hoped for, but I did not let it steal my faith or joy.  I kept on keeping on!  The next disappointment came at age 18 when I learned that I would not be able to drive a vehicle.  Prior to this, I had been accepted into a day time driving program in my home state of Maryland; however, when I began this  program, I quickly learned that driving would be too stressful and dangerous with my worsening vision.  This was a difficult realization in my life, and I definitely experienced a deep sadness as a result.  However, with time and support from my family, I turned my struggle into strength.

For many years after, I avoided going to the eye doctor because of my negative experience when I was 16.  However, during college, I met my husband, and he became the reason for my acceptance of my vision condition.  He spent years searching for answers related to my rare condition.  In 2013, he found the Foundation Fighting Blindness, and managed to connect with the National Eye Institute.  Oh, and I forgot to mention, we had two healthy and fully-sighted sons during this time as well!  

In 2014, we participated in our first Baltimore VisionWalk.  This was the first time I had ever been surrounded by other individuals who were blind or visually impaired.  I will never forget the way I felt that day.  It was the first time I didn’t feel alone in my vision journey.  In 2016, I had my first appointment at the National Eye Institute.  I spent hours completing assessments and genetic blood tests.  By 2018, at age 28, I finally received my vision diagnosis of Leber congenital amaurosis with the determined deficient gene, LCA5.  LCA5 is one of the most severe and rare forms of Leber congenital amaurosis.  It is considered a progressive inherited retinal disease which causes deterioration of the retinas.

I noticed a significant change in my vision when I began my career as a Teacher of the Visually Impaired.  After I earned my Master’s degree in Special Education, I began working as a TVI in the Eastern Panhandle of West Virginia.  My visual impairment continues to allow me to connect with my students in a very special way.  Currently, I am in my third year as a TVI, and I am still learning so much about my personal vision loss journey through working with my students.  

At this point, my vision continues to worsen from day to day.  I have extremely restricted visual fields, I am no longer able to read my own handwriting, I rely on screen readers for large consumptions of text, and I am no longer able to recognize faces.  I utilize a white can when traveling independently indoors (e.g. during the school day).  I struggle with transitioning from different types of lighting (i.e. outdoors to indoors), and I am often startled when someone approaches without verbally communicating beforehand.  

At age 33, I am finally able to say that I have fully accepted my vision condition.  It took most of my life for me to reach this place of acceptance; however, I have faith that anything is possible!  I strongly believe a cure is in sight for many blinding diseases, and I will continue to utilize all of my effort to advocate, serve, support, and raise awareness for the blindness community.

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Hello. My name is Marwa Ibrahim and I am 27 years old from Lebanon.

I was diagnosed with Stargardt disease at the age of 16. First it was really hard for me to understand that my life would be a bit different than normal teenagers. I can’t see everything normally. There were many obstacles I should understand that I can’t do. I can't drive, I can’t cross roads alone, can’t read or study normally. It was challenging for me to finish university with my case since I wasn't yet used to the new lifestyle I will be living through.

Okay, now it is still really hard for me to accept that I have a case different than others and I go through many difficult situations in my daily life. 

My message for whoever is struggling with a rare disease — stay positive, stay happy. Think that the disease is the reason why you are special. Just like me. Even though I struggle from many situations,  I feel my case made me special and Stargardt made me have star eyes.

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