Story Gallery

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

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

Since I was diagnosed with retinitis pigmentosa at a young age, I had time to prepare for vision loss, but did I really? No! You can never prepare losing something until it is gone. Even if I try to prepare, my vision will get worse continuously. It's hard to explain to people that three months ago, it was okay for me to ride a bike at night but now it's hard to even walk at night. Or that you could read a book all day and now you're not able to recognize any text at all. The hardest part is accepting all these losses. Have I accepted it at all? No! I'm not telling my story to show everyone how strong this disease has made me or how great life is despite all the drawbacks. It is hard to lose your vision and it's hard to accept that you're losing your independence but there is a way to deal with it. There's help out there, and there are techniques to push away the dark thoughts. My way to deal with vision loss is to be grateful not necessarily for what I can see, but for what I have. I don't pin my happiness on just one thing. If being able to see was the only thing that made us happy, then everyone in the world would be happy, despite those who can't see, but that's not true, is it? Learn to be grateful for the scents of flowers in spring, the soft beaches in summer, the colorful leaves in fall, and the delicious Christmas cookies in winter. Also, try to put your mind or negative thoughts to sleep and find things to distract you. Try yoga, go for a walk or listen to an audiobook. Just don't stay alone with your negative thoughts for too long because that will cause you to overthink and worry, which may not even be rational. Last but not least, take it one step at a time. That's the first thing my friend said when I told him how overwhelmed I was with losing my vision and, in a way, with myself. One step at a time means not looking to the future. Not trying to figure out when I will lose my sight or how I will get around when I can no longer see. Of course, it may be necessary to think about career changes, but I'll cross that bridge when I get there. Anyone would be overwhelmed if they had to learn how to use a white cane, learn Braille, and worry about inheriting a disease — all in one day. For me taking a breath and taking a step back is the key to dealing with all of this. It's still hard, and sometimes I get sad, but there are ways to combat all of this so you can continue to be happy despite all the pain.

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.

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.

[[image 1692]]

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. 

In honor of Blindness Awareness Month, I felt compelled to share how blindness and the Foundation Fighting Blindness has affected me personally. Years ago, when I met my father-in-law for the first time, I would have never been able to tell that he is blind. My father-in-law was diagnosed with enhanced s-cone syndrome when he was a college sophomore at the University of Miami in the 1970s. The most determined person I know, he never let his sight dictate his story. As I grew closer with him, I learned that it’s the amazing work and research of the Foundation Fighting Blindness that gives him hope that one day we will cure blindness. 

After attending a few events, I understood how special this organization is and knew it was something I want to be a part of. My goal, along with curing blindness, is to ensure the future of the organization for generations to come. Something amazing about FFB is not only the accessibility services they provide, but also the amount of fundraising dollars that get deployed towards research to find a cure. I’m confident that one day we will get there, and I kindly request that you join me in donating to help us reach our goal. Every dollar is a step towards curing blindness, and brings us hope that one day nobody will have to go through life without their sight.