Your vision-loss journey: a team of specialists may be able to help
December 20, 2021
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.
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.
Factors that might affect your journey
If your specialists are too far away, ask about telehealth options. If you live in a rural area, Zoom-style office visits make it easier to see a provider. Systems and technology have only improved since the COVID pandemic began, and meeting your provider remotely is a great way to protect yourself against other illnesses.
Don’t be afraid to ask your specialist questions, or to get a second opinion. While a glasses prescription may address some vision loss challenges, other eye diseases and IRDs can’t be fully addressed with optometrics. (Check out our discussion guides here.) Ask your doctor for a genetic test, as it is the only definitive way to diagnose an inherited retinal disease (IRD)7.
Genetic testing has become easier and more widely available than ever before. It may also be available at little or no cost to the patient. The information can be of significant benefit to you and your family. Your personal health information remains private; your identity is protected. Looking for a provider who is familiar with genetic testing? Find one near you.
- 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
- American Association for Pediatric Ophthalmology and Strabismus. Pediatric Ophthalmologist. Accessed November 15, 2021. https://aapos.org/glossary/pediatric-ophthalmologist
- American Society of Retina Specialists. What is a Retina Specialist? Accessed November 15, 2021. https://www.asrs.org/patients/what-is-a-retina-specialist
- 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/
- National Society of Genetic Counselors. About Genetic Counselors. Accessed November 15, 2021. https://www.nsgc.org/About/About-Genetic-Counselors
- Birtel J et al. Diagnosis of Inherited Retinal Diseases. Klin Monbl Augenheilkd. 2021;238:249–260.
- Lee K, Garg S. Navigating the current landscape of clinical genetic testing for inherited retinal dystrophies. Genet Med. 2015;17(4):245–252.