Low Vision, High Hopes: My Journey with Stargardt Disease

By Anam S. Minhas, Marketing, Communications & Development Specialist, Donka, Inc.

 

Low Vision Awareness Month and Rare Disease awareness are deeply personal to me—not just as a professional working in the disability space, but as someone who has navigated a lifelong journey with vision loss.

My name is Anam Minhas, and I joined Donka, Inc. last January as the Marketing, Communications and Development Specialist. My journey to Donka was a full-circle moment and a true reflection of the life-changing impact organizations like Donka have on people with disabilities.

AN UNEXPECTED CAREER PATH
After leaving my previous role, I found myself navigating a difficult and discouraging job search. Despite holding a B.S. in Marketing, my career path led me to the financial sector, where I spent seven years, most notably, as a Mortgage Loan Officer with PNC Bank. In my tenure, I became a top-producing loan officer and earned several awards and recognitions for my work, but I still felt a strong pull to return to my roots in marketing and communications—work that aligned closely with my passion for storytelling, connection, and community impact.

I attended countless career fairs, including several focused on disability employment, and submitted numerous applications without success. Like many individuals with disabilities, I faced invisible barriers that went beyond qualifications or experience. But it was through one of these resource fairs, I learned about the State’s job placement services for people with disabilities. I opened a case with the Bureau of Blind Services, and they put in a referral to Donka for job placement, but in a powerful twist of fate, Donka had an internal job opening that aligned perfectly with my career goals, my skills, and most importantly, my passion.

LOW VISION JOURNEY
I have been visually impaired since birth, but I was not diagnosed with Stargardt disease until the age of eight. Stargardt is a progressive, inherited rare eye disease, and reaching that diagnosis was a long and uncertain journey filled with countless doctor visits, specialists, and unanswered questions. For years, my family and I searched for clarity about my vision and what it meant for my future.

School presented the biggest challenge. Accommodations were nothing like they are today. I was paired with Vision Rehabilitation Counselors and Orientation & Mobility Specialists and given accessibility tools like oversized, large-print textbooks and bulky magnifiers that were anything but discrete. I resisted accessibility tools and struggled to use them to their full potential out of fear of being different from my peers. Because of that, I never spoke openly about my vision impairment—not even when I should have. For most of my life, I carried my vision loss quietly and invisibly.

Growing up in the 1990’s, low vision resources were hard to find, but my parents were relentless in their search for answers, so they took me to every conference and community event focused on blindness and disability. At the time, I hated every moment of it. Like many children, I wanted to be untouched by labels and most certainly did not want to ask for help.

But life has a way of reshaping perspective.

CHANGING THE LENS
It was at one of those low vision events, I met Tom Perski, another individual who had Stargardt disease and later became a mentor in my career. A seasoned professional in the low vision field, he introduced me to the possibilities within the industry and, more importantly, helped shift my mindset. Through his guidance, I learned that there was nothing limiting about being visually impaired. He made assistive technology exciting and empowering, and he introduced me to a network of organizations, resources and advocacy groups serving individuals with low vision.

Years later, when I returned to those same spaces as an adult, everything was different. I found connection instead of discomfort. I found community instead of isolation. I met dozens of people living with Stargardt, from across the country and around the world, and I realized I had never truly been alone; I just had not found my community.

At annual eye doctor appointments, I was often told that a cure might come by the time I reached my thirties. I am now 38—there is still no cure, but what I discovered at these low vision conferences was something just as powerful: progress. For the first time, I wasn’t just hearing vague optimism, I was seeing real scientific momentum. Researchers were discussing active clinical trials in Phase II. The conversation had shifted from “someday” to “in motion.” And that shift changed my outlook on my future.

Beyond the science, I also discovered something just as transformative: community in action. I learned about social media creators openly living with Stargardt and using global platforms to raise awareness. I saw organizations like Two Blind Brothers, founded by siblings with Stargardt, turning lived experience into advocacy by funding treatment research through their “shop blind” challenge. Suddenly, hope wasn’t abstract. It had faces. It had voices. It had movement.

It’s heartwarming to know that future generations have a plethora of mentors to look up to and learn from. These community events and connections create a space not only for learning, but for healing—open conversations about mental health, identity, grief, resilience, and possibility. They reinforced something I now believe deeply: our diagnosis may be part of our story, but it does not define our future.

COMING FULL CIRCLE
Over the course of my career, I have worked with three nonprofits devoted to supporting people with disabilities. Along the way, I met students living with vision impairments and their parents. Many of these parents carried the same fears mine once did—wondering if their child would finish school, find a career, or live independently as their vision changed. When they saw me in a professional role, confident, working, and thriving, I could see a shift in them. Hope replaced fear. Possibility replaced uncertainty.

These connections fill me with purpose. They remind me how far I have come—from a scared child navigating a world with few resources, to an adult helping ensure others have access to the tools and opportunities I once struggled to find.
And it is exactly why my journey connects so deeply with Donka’s mission.

MY VISION, DONKA’S MISSION
Today, at Donka, I have the privilege of helping others access the same life-changing resources that once transformed my own path. Every story we share, every program we promote, and every person we serve represents possibility. It represents someone gaining confidence, someone entering the workforce, someone reclaiming independence, and someone realizing they are not alone.

Low Vision Awareness Month and Rare Disease awareness are about more than recognition. They are about truth, struggle, visibility, and hope. This is the first time I am fully sharing my story—not because it is easy, but because it matters. Because somewhere, a parent is afraid for their child’s future. Somewhere, a child feels different and alone. Somewhere, an individual is getting a diagnosis and wondering if life will still be full of possibility. To them, I want to say this:

I was that child. My parents carried those fears. And today, I stand here—living proof—that a diagnosis does not define your future. Vision is not only what we see. It is what we dare to believe is possible. And when that belief meets support, community, and opportunity — lives change.