I Didn't Know I Had Albinism

When I was an infant my mom took me with her to the dentist. I was sitting with the receptionist, and she was watching me for a few minutes when she noticed something strange about my eyes.

She recognized it as a condition her own son had called optic nerve hypoplasia (ONH), as a result of which he had gone blind. It took her weeks to reach out to my mom and tell her. I can't blame her; that's a very scary thing to lay on someone as a stranger.

When she finally did make that phone call, my parents took me to several doctors, most of whom initially thought I had ONH. Ultimately, it turned out I did not have that condition, but my parents were told at the time that I would eventually become totally blind.

They were told I'd have a hard time doing most things and would probably need a caretaker for most of my life, which is an interesting thing for them to have said, because I know plenty of blind people who live perfectly independent lives.

But naturally, my parents were heartbroken and very worried. They took me to one final doctor—who I still have to this day—who told them that I actually had oculocutaneous albinism (OCA), a genetic condition that affects the body's ability to produce melanin.

The condition did not cause me to become blind, but it did mean that I would live my entire life with an uncorrectable vision impairment, or "low vision." This means that traditional vision aids—like glasses or contacts—would not help me see more clearly.

With this in mind, my parents focused on what the functional problem was: The visual accommodations I would need for everyday life.

I struggle to describe my visual impairment because I've never had normal vision, but I feel the best way to explain it is that if a regular person sees in high definition, I see in standard definition.

It's not that there's any part of my vision that is missing. For example, those with macular degeneration (AMD) usually have central field loss. That isn't the case for me—I am just not getting as much visual information.

With that said, I do believe I have less peripheral vision than most people; things move further away and become harder to make out because I don't see as much detail. But for the most part, it's a matter of not having as many pixels.

I was always very open about my visual impairment with the people who were around me, and I think that was because my parents never placed any shame on it. I was never taught to be a victim of it.

So for most of my childhood and teenage years, I didn't really even know that I had albinism. In fact, the first time I actually asked my parents about my diagnosis was at the age of 18 when I was writing my college essay.

While I still had a fairly regular childhood, there were certainly some unique challenges that I dealt with because of my low vision. At school, I always sat at the front of the class, but still always struggled to see what the teacher was writing on the board.

Around the fifth grade, the New Jersey Commission for the Blind got me large print copies of all of my books and workbooks. For me, low-vision support organizations provided everything I used at school, including magnifying glasses and computer enlarging software.

Though most of my teachers were great, there were occasional issues when it came to fairness. For example, during one of my final high-school exams a teacher forgot to expand the size of my test, so during my test time I had to walk down to the guidance counselor's office and get it blown up myself.

It was also in high school that I met another person with a visual impairment for the first time.

To this day I don't know what condition he had. We never really connected, but we shared a guidance counselor. She would often ask me how I dealt with issues connected to my impairment, and whether I would help him with his own.

While I was happy to help as best I could, I realize nowadays that schools like my own had to lean on me, despite being just 14 years old, to provide information on how to support visually impaired students.

I didn't meet another person with albinism until I was 21 years old and stumbled upon the Instagram account for the National Organization for Albinism and Hypopigmentation (NOAH).

I decided to attend their big bi-yearly conference—ironically held in Orlando, Florida during the summer—with my mom. Until I met this group of other young adults with albinism, I didn't realize all the ways that "normal" people didn't understand me.

Simple things like using my nose to navigate my Apple Watch, because I'm already looking at it so darn closely that my face is already there, was something I didn't know was common among my little albinism community.

They understand feigning laughter when a friend tries to show you a meme on their phone, but they just turn it around and don't let you hold it, so you pretend you've seen it.

That conference made me see that there were people who understood me, as well as the challenges that I faced each day.

Along with practical challenges, like access to transportation, I think one of the biggest issues that the low-vision community faces overall is a lack of understanding about those issues.

Many people don't even realize that a moderate low-vision population even exists. They think: "Oh, you have a vision impairment. Well, put on your glasses."

They believe that if that impairment cannot be corrected by glasses, then you must be completely blind, with no light perception. But the fact of the matter is that most people with any type of vision impairment fall in between those two things.

For me, educating people of that fact is really important, because it can be exhausting to constantly have to explain that to people in my everyday life.

Spreading awareness of the low-vision community was definitely a motivator for my creation of ReBokeh, an app that empowers low-vision users to make better use of the vision they do have.

While I imagine that various assistive technology companies have knowledge of this population, it seems as though all the technology being developed targets those who are blind or very near blind.

It feels as though there's limited technology that helps people leverage their existing vision, which is what most people want. For example, I vehemently disliked audiobooks when I was in middle school, but that was all they wanted to give me.

Teachers would say: "Here's your math textbook in audio format." I would always say: "That sounds horrible. I have all this vision. Why can't I use it?"

They would tell me I had to have it in case I needed it, but I was a stubborn kid. If I say I'm not going to use it, I'm not going to use it. At that time, I wanted help that made sense.

That's really where the idea for my app came from: How can we build a technology that helps enhance the value of a person's existing vision, instead of defaulting to audio or braille?

ReBokeh is effectively a live photo editing app. But instead of the settings being optimized to make a pretty picture, they're optimized to make the world more viewable.

So we're using a live camera feed from your device and we are optimizing that experience for vision enhancement. We're providing filters like contrast, exposure, different colors, and inversion options.

Since launching in June 2022, we've had a number of users reach out and say: "Thank you. It is so clear that this was developed by someone who actually understands this community and actually cares about providing something that's useful to us."

One message that particularly touched me was from an artist who lost her vision due to AMD. She used to love going to art museums, but now she has significantly less vision, making it very hard for her.

But through using the app her passion for museums has been reignited because she can actually use our technology to see the art; see the brushstrokes and the colors, even in low light.

I am so thankful that this app has been able to touch so many people, from all around the world.

We're really excited about where this app is going, as a way not only to hit as many people as we can in one place, but also to provide this service for free to the individual where they will need it most.

Rebecca Rosenberg is an engineer and entrepreneur. She is the founder of ReBokeh.

All views expressed in this article are the author's own.

As told to Newsweek's My Turn associate editor, Monica Greep.

Do you have a unique experience or personal story to share? Email the My Turn team at myturn@newsweek.com.