Your vision-loss journey: a team of specialists may be able to help

Navigating vision loss is a journey. Understanding the wide range of available eye care providers can transform it from daunting or intimidating into an opportunity for self-empowerment, knowledge, and control. Start here.

When you, your child, a family member, or a friend loses their eyesight, it sets them on a journey. For a toddler, the journey may start when someone else notices something about their vision that seems unusual. For a young student, it might begin with a blurry whiteboard and a visit to the school nurse. For teens or adults, it might start when they first realize they’re not seeing what others see.

However it begins, the journey will involve meeting experts who can help. Understanding the range of available eye care specialists can provide support and information for navigating your options. No two vision-loss journeys are alike, but they often follow predictable steps, and knowing those steps can be useful and comforting.

For a child experiencing vision loss, their first stop is often a pediatrician. Trained to diagnose and treat a range of childhood illnesses, pediatricians manage a child’s physical, behavioral, and mental care from their birth through age 18. As a parent or guardian, you should ask them—or any provider—questions about your child’s vision. The doctor may ask you, too.

The provider you start with may refer you to one of several experts:

• An optometrist¹ is licensed to practice optometry, which primarily involves performing eye exams and vision tests. They are trained to prescribe and dispense corrective lenses, detect certain eye abnormalities, and prescribe medications for certain eye diseases.
• The optometrist may refer you to a provider for something they don’t treat. An ophthalmologist¹ specializes in the medical and surgical care of the eyes and visual system, as well as the prevention of eye-related diseases and injuries. They provide vision services, eye exams, medical and surgical eye care, and diagnosis and treatment of visual complications caused by other conditions. Many ophthalmologists also take part in scientific research on the causes and cures for vision disorders.
• As its name suggests, a pediatric ophthalmologist² has additional training, experience, and expertise in examining and treating children’s vision issues. Pediatric ophthalmologists use equipment specially designed for kids and often establish their practice in a children’s or large community hospital or university medical center.

No two vision-loss journeys lead to the same specialists, but knowing who they are and what they do can offer a clear path to vision care.

As these specialists analyze the person’s vision challenges and make or reject possible diagnoses, they may direct them—and you—to specialists with even narrower degrees of knowledge.

• One expert at this next level is a retina specialist³: a medical doctor who specializes in ophthalmology and whose sub-specialty is in diseases (and surgery) of the eye’s retina and vitreous humor: the clear gel that fills the eye. Depending on the physiology of the person experiencing vision loss, their condition may require a retina specialist’s expertise.
• A low vision specialist⁴ is a doctor of optometry or ophthalmology who advises those diagnosed with low vision, defined as anything 20/70 or higher, to improve their quality of life. They can give eye exams and offer training in the proper use of low-vision devices; for older adults, they can provide advice and tips on treatments and lifestyle changes to help maintain independence as their eyes grow older.

At any point along the journey, an eye care provider may suspect that variations in a person’s DNA may be affecting their vision. They may suggest getting a genetic test as a way to learn more about the issue. A genetic test for an inherited retinal disease (IRD) requires a simple saliva, cheek swab, or blood sample that can provide valuable information that benefits you, your family, and your healthcare team. Genetic testing for an IRD can be done at little or no cost to the patient. You should ask, and continue to ask, your specialists about whether genetic testing is an option for you.

If so, you might be referred to one of the following:

• Before or after a genetic test, a genetic counselor⁵ can field questions about the process and how to understand the results of the test. For families with a history of IRDs, the genetic counselor can play a key role. Following a doctor’s suspicion of retinitis pigmentosa, Leber congenital amaurosis (LCA), Stargardt disease, cone-rod dystrophy, or other vision-related conditions, they can provide information about how genetic conditions might affect you or your family.
• Finally, any one of these experts may refer you to an IRD specialist⁶. Because IRDs can be difficult to diagnose, this specialist may make use of additional procedures—detailed medical histories, a clinical exam, advanced retinal imaging, genetic testing, and more—to establish an accurate, comprehensive diagnosis of your specific IRD.

For those individuals experiencing a loss of vision, their journey will be ongoing. Meeting with these specialists and exploring the options they suggest can help make it a little easier. Whatever the journey, you’re sure to find places along it where clarity and support can help you feel empowered, knowledgeable, and in control of your situation.

1. American Association for Pediatric Ophthalmology and Strabismus. Difference between an Ophthalmologist, Optometrist and Optician. Accessed November 15, 2021. https://aapos.org/glossary/difference-between-an-ophthalmologist-optometrist-and-optician
2. American Association for Pediatric Ophthalmology and Strabismus. Pediatric Ophthalmologist. Accessed November 15, 2021. https://aapos.org/glossary/pediatric-ophthalmologist
3. American Society of Retina Specialists. What is a Retina Specialist? Accessed November 15, 2021. https://www.asrs.org/patients/what-is-a-retina-specialist
4. PreventBlindness.org. What to Expect From a Low Vision Specialist. Accessed November 15, 2021. https://lowvision.preventblindness.org/2002/04/06/what-to-expect-from-a-low-vision-specialist/
5. National Society of Genetic Counselors. About Genetic Counselors. Accessed November 15, 2021. https://www.nsgc.org/About/About-Genetic-Counselors
6. Birtel J et al. Diagnosis of Inherited Retinal Diseases. Klin Monbl Augenheilkd. 2021;238:249–260.
7. Lee K, Garg S. Navigating the current landscape of clinical genetic testing for inherited retinal dystrophies. Genet Med. 2015;17(4):245–252.