For many individuals with Cerebral/Cortical Visual Impairment (CVI), the path to diagnosis is rarely straightforward. Misunderstandings, partial answers, and years of unanswered questions are common. In honor of CVI Literacy Month, PCVIS board member Janina Rigó shares her personal story—a journey that began with reading challenges and a dyslexia diagnosis, and ultimately led to a deeper understanding of CVI.
Growing Up Between Two Languages—and Struggling to Read
Janina grew up in Budapest, Hungary, attending a school where the primary language of instruction was Hungarian. At the same time, her parents enrolled her in an advanced English program, requiring her to learn to read and write in two languages from the very beginning.
While this opportunity opened doors, it also presented significant challenges.
“I had quite the trouble learning to do both,” Janina recalls.
Recognizing her difficulties, her teachers made adjustments. She was partially withdrawn from the advanced English program so she could focus on Hungarian literacy. But even with that change, the struggles persisted.
A Dyslexia Diagnosis—But Not the Full Picture
By the end of fourth grade, Janina’s teachers recommended a full evaluation. She was assessed at the Pedagogical Institute of Budapest, where specialists concluded she may have dyslexia. The primary support offered was additional time on exams.
For a while, this explanation seemed to fit—at least partially. Janina moved forward into middle school with this understanding of her challenges.
Then came an unexpected turning point.
A Temporary Shift That Helped—But Didn’t Explain Everything
When the COVID-19 pandemic hit during her fifth-grade year, learning moved online. For Janina, this change brought surprising benefits.
Remote learning allowed her to create a more individualized approach to studying—something that made reading and learning more manageable.
But as school demands increased again in later years, new challenges emerged.
When Symptoms Became Impossible to Ignore
By seventh grade, Janina’s schedule had intensified. She was balancing new academic subjects, national-level equestrian competitions, and a demanding routine. At the same time, her symptoms became more pronounced.
She began experiencing:
- Double vision
- Difficulty processing visual information
- Persistent fatigue—especially in her eyes
These experiences didn’t fully align with dyslexia. Something else was going on.
I always felt like, even though my body is well-rested, my eyes are still tired. It’s like I can’t really process what’s happening around me.
The CVI Diagnosis—A “Eureka” Moment
A few years later, Janina finally received a diagnosis of CVI.
“It was definitely a ‘Eureka’ experience,” she says.
Suddenly, the pieces fit together. Her difficulties with reading, visual processing, and fatigue were not solely related to dyslexia—they were rooted in how her brain processes visual information.
The earlier diagnosis hadn’t been entirely wrong—it had helped her access support—but it hadn’t told the whole story.
Lessons Learned: The Importance of Looking Deeper
Reflecting on her journey, Janina offers an important message for families, educators, and individuals navigating similar challenges:
“Go that extra mile once you receive your diagnosis.”
She encourages others to:
- Continue researching beyond an initial diagnosis
- Seek credible information and resources
- Consider second opinions when something doesn’t fully add up
While misdiagnosis can be frustrating, Janina also recognizes that her dyslexia diagnosis played a role in her advocacy. It pushed her to speak up about her struggles and seek answers.
Why Stories Like Janina’s Matter
Janina’s experience highlights a reality many in the CVI community know well: CVI is often misunderstood, undiagnosed, or mistaken for other learning differences.
Her story is a reminder that:
- Reading challenges can have multiple underlying causes
- Visual processing differences are not always immediately visible
- Persistence and advocacy are key to finding the right support
At PCVIS, we are committed to amplifying voices like Janina’s—because awareness leads to earlier identification, better support, and more accurate diagnoses.