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What is CVI?

CVI is a brain-based visual impairment caused by damage to the visual pathways or visual processing areas of the brain.

An illustration with a boy holding a ball looking into colorful swirls, dots, and patterns

What is CVI?

Cerebral/Cortical Visual Impairment (CVI) is the leading cause of childhood blindness and low vision. It’s a brain-based visual impairment caused by damage or interruption to the brain’s visual pathways. CVI can occur at any stage of life, congenital or due to injury, from many causes, and has diverse presentations. It affects how individuals process and interpret visual information. People with both healthy eyes and eye conditions can have CVI, since the issue is with the brain’s interpretation, not the eyes themselves. They have trouble processing what those eyes can see.

Individuals with CVI may have difficulty with visual attention (being able to look at something) and visual recognition (being able to recognize what you are looking at), which can result in a lack of access to the visual world. Some people with CVI may see the world as distorted and unrecognizable. Others can focus but might struggle to understand what they see. A crowded setting, a hot day, or fatigue has the potential to make vision use nearly impossible. 

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With CVI, the brain has difficulty converting the raw data from the eye into a reliable, meaningful image of the world that can be interpreted and acted upon.

Matt Tietjen, CTVI and leader in the field

What causes CVI?

Current research shows that CVI has many causes and associated conditions. This is not an exhaustive list. CVI is common in neurodevelopmental conditions, and complications from premature birth, lack of oxygen, pediatric stroke, and genetic conditions are common causes of CVI. As more people with CVI and their families share their stores and as the science of CVI evolves, we’ll continue to learn more.

There are several common causes of CVI, including:

What are associated conditions with CVI?

Many conditions co-occur with CVI, including:

How prevalent is CVI?

CVI is extremely common, yet remains widely underdiagnosed. 

Common CVI behaviors

CVI manifests differently in each person, but there are common visual behaviors and traits. These may include:

People with CVI often develop unique compensatory skills (nonvisual and metacogntive skills) to access their learning, community, and daily activities. Support for CVI needs to be sustained and lifelong.

CVI is sometimes misdiagnosed as an emotional or psychological disorder. Common misdiagnoses include ADHD, autism spectrum disorder, delayed visual maturation or learning disabilities. CVI is often one piece of a child’s complex diagnosis.

If you’ve met one child with CVI, you’ve met one child with CVI.

Dr. Gordon Dutton

CVI’s impact

Individuals with CVI, their families, and current research share how CVI impacts many aspects of life, development, and mental and physical health. These include:

Centering the lived experiences of those living with CVI is paramount to understanding how deeply CVI affects an individual’s daily life, the complex and diverse ways CVI manifests, the varied compensatory skills and techniques used for access, and why targeted interventions and access must be unique to how an individual experiences the world.

Information is landing on your eyes, but you can’t make sense of it. You can’t wrap your head around things you’re seeing. You can’t tell where one object ends and the next begins. You are looking at things, but you don’t know what you are looking at.  

-Nai, adult with CVI and author of The CVI Perspective
A young boy with CVI looks at colorful 3D shapes on a lightbox

How to diagnose CVI

There’s no standard diagnostic test for CVI, which makes it hard to identify. 

However, this is changing: The National Eye Institute and National Institutes of Health have now identified CVI as a research priority.  They also released a detailed working definition of CVI to support diagnosis, so clinicians can better recognize kids suspected to have CVI.  The American Association of Pediatrics also published guidance for pediatricians on the diagnosis and care of children with CVI.

A pediatric ophthalmologist, neurologist, neuro-ophthalmologist, optometrist, or clinical low vision specialist typically makes a CVI diagnosis.

Important CVI resources

If your child is diagnosed with CVI, you might be worried and overwhelmed. CVI research and treatment are continually growing and improving. We offer detailed, science-backed knowledge, guidance, and tools for:

Where to find your CVI community

CVI Now offers so many ways to connect, including:

Lean in. We’ve got you.

Every person with CVI has a right to life-changing access.

Every person with CVI has a right to early diagnosis, effective vision services, and an accessible education — no matter their zip code and no matter how their CVI manifests.

With CVI, it’s about access to learning. Visual skills are not a prerequisite for learning and access. With comprehensive (and integrated) assessment and accessible educational programming, individuals with CVI can learn to access their world in the way that works best for them. Some use visual skills, some use compensatory strategies, and many use both.

Foundations of access:


References:

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