Story Gallery

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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As a young person, I was told that I had a rare eye condition called rodmonochromatism, a form of achromatopsia. It is rare but in my family, four out of five of us were legally blind in varying degrees. Then three years ago, my sister and I were invited to participate in a research study at Mass Eye and Ear to hopefully improve our vision by putting some genetic material under our retinas to hopefully stimulate the genes that would activate our cones and perhaps we would see color, have improved visual acuity and better depth perception.

Before we started, I had this inspiration to create Millie, who would help me tell our research story. Meet Millie the rainbow sock monkey. She went to every appointment and then told family and friends how the appointments went.

My sister and I did not experience measurable improvements in our vision, but we are convinced that something happened. Both of us have visibly different vision in each eye now. However, our greatest hope is that the research they are doing with us will benefit younger people. Just the fact the we got to participate in this research project is a dream come true that some day achromatopsia can be treated.

Thanks for letting me share a small part of my vision story.

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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 knew there was something wrong from an early age.  When I started playing tee ball in the first grade, I had trouble tracking a baseball that was thrown or hit toward me.  So I switched to soccer.  I saw multiple ophthalmologists who were unable to determine the cause of my vision impairment.  Finally, at age 16, when I was getting ready to learn how to drive, I was finally diagnosed by a retinal specialist with retinitis pigmentosa (RP), a disease that causes progressive loss of peripheral and night vision, and eventually, central vision, and was coldly informed that I should never drive a car.  So I moved to New York City for college, where having a car is more of a nuisance than a benefit.

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I hid my vision loss from my friends, classmates and colleagues for as long as I could. I steered clear of any activity that posed a significant challenge, and missed out on a lot of social opportunities.  I thought I was doomed for a life alone, without a spouse or companion.  Eventually, my vision loss progressed to a point where I couldn’t hide my disease from the world any longer.  So I decided to slowly “out” myself in my first year of law school, using a white cane in my summer internships and jobs post-law school.  I shared my diagnosis with my friends, who were of course were unsurprised, having noticed my vision challenges over the years.  Slowly but surely, my confidence improved, I became a successful attorney, and eventually, met and fell and love with the most beautiful, supportive woman who would eventually become my wife.

I now have an incredibly fulfilling life.   But I still push for a cure for RP and other inherited retinal diseases by supporting the Foundation Fighting Blindness, with both my time and resources.  Serving on both New York chapter committees and a national Strategic Council for FFB has given me an insider’s look at the ongoing progress that is being made toward treatments and cures for blinding diseases, some of which are already FDA approved, others in ongoing clinical trails, and still countless other opportunities on the horizon. 

If you are able to donate to the Foundation Fighting Blindness in my honor as part of #ShareYourVision, please visit their website to make a gift.

As part of Blindness Awareness Month this October, I’m participating in the Foundation Fighting Blindness’ #ShareYourVision campaign. 

I have Retinitis Pigmentosa (RP), which causes me to gradually lose my vision.  I struggle to see in low light conditions (i.e., night blindness), and I have lost most of my peripheral vision (i.e., tunnel vision).  Even with contacts, my remaining central vision is very poor. Over time, RP is likely to cause me to completely lose all of my vision.  

The notes taken by one of my ophthalmologists summarizes the beginning of my vision loss well: “Dr. Exley doesn’t remember seeing the stars as a child….”  I always find that note to be bittersweet.  

Bitter, because I remember my family’s big trip to the Grand Canyon when I was in middle school.  I remember one night when we all went outside to look at the stars.  I remember straining to see what everyone was talking about, convincing myself that I could see some twinkle as well.  At the time, I had no idea that I had RP. For all of my childhood, my vision was good enough that I never even had a suspicion that my vision was more limited than others.  But it makes sense now.  I couldn’t see the stars because my vision was already deteriorating.  I don’t think I have ever seen the stars.   

Sweet, because my ophthalmologists are perhaps the only people who refer to me as “doctor.”  While they are not technically incorrect to call me “doctor” (since I have my PhD in Economics), first names are much more common in my profession. I’ve of course told them to call me Christine. But they kindly insist. I know it’s a sign of respect, and as odd as “Dr. Exley” sounds to me, I appreciate it. I appreciate it because, unlike so many experiences I have had —and unlike so many more experiences that others with disabilities have had — my ophthalmologists never talk down to me. They talk to me as if I am a peer, a colleague. Despite almost never receiving good news at my ophthalmology appointments (it’s a progressive condition after all), I enjoy going to those appointments.  My ophthalmologists are perhaps the only people who truly understand the depths of my current and expected vision loss, but they do not treat me differently because of it.

For most of my life, people didn’t know about my vision loss. For a long time, even I didn’t know about it. But even after I learned about it, late in college, I hardly mentioned it for the next decade. Even now, as my vision has become more severely limited and more difficult to “hide,” I often don’t tell people about my vision. I rationalize my silence by convincing myself that I just don’t want to make others feel bad or uncomfortable.

When I’m playing with my daughter at the playground and walk into a pole, the path of least resistance is to laugh and say “goodness I’m clumsy today” to the slightly-concerned looking parent of some nearby toddler.

When a nurse gives me a form to sign and I cannot find the signature box, it’s easier to fib and say “this font size is too small for me to read without my glasses, could you please point out where I should sign?” (I omit the fact that I’m already wearing my contacts.) 

When a friend or family member shows me a photo of their kid or puppy on their phone, I say “cute!” I’m sure their kid or puppy is cute! But, for all I know, they could be showing me a photo of a potato.  

When meeting with a colleague or student in my office and they comment on how nice my 60-inch computer screen is, I say “indeed — it’s awesome!”  When they ask how to get such a computer screen themselves, I simply smile and shrug, rather than saying “well, you could try going blind, but I don’t recommend it…”  

Even when I choose to convey a certain level of severity to my vision—e.g., by noting that I’m legally blind—I let people assume that my poor vision is stable, rather than in a perpetual decline.   

I don’t expect people to somehow intuit my vision loss without me explaining it.  I don’t even expect people who know that I have vision loss to remember it.  Sometimes, I forget that there are things that I cannot see.  But, the sad truth is, I mostly don’t speak up about my vision loss because I’m worried about what others will think about me. I worry that my ophthalmologists are the exception. I worry that others will think less of me.

I am a short young woman trying to become a tenured economics professor. I know how easily some folks already dismiss me — how much easier would it be to dismiss me if they know I’m going blind?

Blindness is wrongly associated with ignorance. Think of how the word “blind” is commonly used — we talk about blind spots, blind loyalty, and blindly following the crowd. You may even use it as an insult: “it’s like the blind trying to lead the blind.” 

That said, I also realize how I’m not helping the problem by staying silent.  It’s true that I’m still working on getting tenure. But, it’s also true that I have my PhD in Economics from Stanford University and that I’m an Associate Professor at Harvard Business School.  I’m undeniably privileged.

It’s time for me to speak up about my vision loss.

Speaking up has its benefits. One of the most rewarding interactions I’ve had as a professor involved meeting a student who recently learned she was also losing her vision.  She was so grateful to meet someone who was pursuing a related career and facing similar problems. I get that. I didn’t meet anyone with vision loss until I was in my late 20s.  

I told this student what my undergrad advisor (Professor Shawn Humphrey) told me when, during my senior year of college in 2009, I found out that I had RP.  

Just like Shawn had said to me, I told her: “I’m sorry. That sucks.”

Just like Shawn, I didn’t add caveats about hopefully there being a cure in time, or how I was sure it wouldn’t be that bad, or how she should still be grateful for X, Y, or Z.

I just said it sucks.  Full stop.  Because it does.  It sucks. 

I also didn’t lower my expectations for this student.  Just like Shawn maintained full confidence in me, I maintained full confidence that this student would conquer the world (and she is).  I didn’t say it would be easy or hard.  But, my faith in her ability was not affected — at all — by learning that she was losing her vision. 

My vision has worsened quite a bit since 2009. Back then, I used to go months without thinking about my vision. Then, as I would trip on the uneven sidewalks while running, I started to think about my vision every few weeks.  Then, as I gave up playing soccer and gave up driving, I started to think about my vision every few days. Now, as I strategize about how to get from point A to point B without bumping into anyone, I think about my vision a few times every day.  

In many ways, I have been surprised at how easy some “losses” are to get over.  Not being able to see when it’s dim—there are flashlights for that!  Not being able to drive—thanks Uber and Lyft!  I currently have a workaround for everything I need to have a workaround for.  

What is harder to grapple with is the future. The future in which I’ll see even less, perhaps not at all. I know others have very successfully faced such futures, and I know that I should have faith that I will, too.

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But I cannot help looking at my 2-year-old daughter and wondering how I could ever get over the loss of not seeing her smile.  

I wasn’t always sure I wanted kids.  My husband and I were both “on the fence” for a long time.  We laugh about that now.  There has been no bigger joy in our lives than our daughter.  

I know it’s cliché, but I had no idea how much love and how much joy one small being could bring me.  I didn’t know that level of joy was even possible. My daughter is awesome. She is determined. She is hilarious. She is kind. She is clever.  I want nothing more than to see—yes, literally see—her life unfold.  I don’t need much vision. I just want to hold onto a few pixels of vision, just enough to peer through a tiny crack of a window.  

I know that window may fully close.  And, if it does, I’ll still be grateful, and I’ll figure it out. 

But there is also some chance that the window can remain open. 

The best chance for that comes from the Foundation Fighting Blindness. Because the science to prevent many types of vision loss is here. All that is needed is the funds.

If you are able to donate to the Foundation Fighting Blindness as part of the #ShareYourVision campaign, please visit their website to make a gift.  Let’s keep as many windows open for as many people as we can.  

My diagnostic odyssey started over a decade before my eventual diagnosis when my ability to play sports like baseball went downhill rapidly. At 17, I was diagnosed with a rare form of rod-cone dystrophy, and I am slowly losing my vision as blind spots in my visual field expand in area and intensity. Several years later, my sister was diagnosed with the same condition, making the familial nature of inherited disease really hit home. I felt called to actively participate in the search for cures, for the sake of my family and those like us.

For me, it was essential to understand the current bottlenecks and exciting possibilities for new therapies so that I could help bring a treatment to my sister’s retina (and by extension, many others). I joined a biotech company combining genetic and clinical data to better understand the foundational elements of rare diseases, and I am energized by using my professional experience to help our community be innovators across the entire life sciences industry, illuminating the path forward for many rare families.

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In doing so, it has been striking how forward thinking the Foundation is, and incredible to see its impact at scale, as dozens of therapies are in development due to partnerships with the Foundation. I want patients and all stakeholders to know that the pace and quality of progress is extremely heartening.

I hope by sharing my story, affected and unaffected people are motivated to donate to the Foundation to expand the impact of current and future programs. Equally important, is participation in the My Retina Tracker Registry and Open Access Genetic Testing programs to ensure researchers can understand your specific disease and trajectory through the data you share. Awareness is critical to the mission of the Foundation, as well as, we seek to grow the public understanding of what it means to have vision loss. Regardless of how you and your family choose to get involved, I encourage you to get engaged — “Together, we're winning” is more than a tagline, it is the reality.

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 name is Stephanie Fineout. I am 36 years old. 12 years ago, I was diagnosed with a rare eye disease known as retinitis pigmentosa. I started noticing slow changes in my night vision and needing others hands 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 US 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, 2022, 12 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 apt 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 for my family and I to process. I visited Lighthouse of Louisiana this past year and received some amazing insight on tools available for the visually impaired. It was so encouraging leaving that appointment knowing how many things were available to me so that I am able to live my life fully despite my disability. And, I recently finished my white mobility cane training through the Lighthouse of Louisiana in hopes to regain some of my independence back, which is a big step and 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 going to the bathroom safely during a movie in the theater or going to check my sick daughter out of school. I have days where I ask why me. But. This is my life and I cannot change this broken road I’m walking down. So I refuse to feel sorry for myself, not when there are so many out there suffering in real physical pain. I want to set an example for my girls, that no matter how hard life gets, we never give up.

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 12 years of love, support, guidance, help, strength, bravery,  and faith. I will continue to look for the light in the dark and no matter what — I will walk by faith, not by sight.

Treatments and cures for blinding retinal diseases, like the one I have, are right around the corner! The science is here. All that's lacking is the funding. I believe that the Foundation for Fighting Blindness is at the forefront of this hope. Join the cause. Please donate today.