5 Steps to Take After Being Diagnosed with IRD

Working with a healthcare team, prioritizing mental health, and helping others who are living with vision loss from IRD.

Support groups offer an opportunity to share ideas about coping with vision loss and a chance to help others who need support.

Inherited retinal diseases (IRDs) are a group of eye diseases that are caused by a person’s genetics. There are many different types that have been identified, and potentially many more that have not yet been identified. Many IRDs begin in childhood or young adulthood, but these diseases affect people of all ages.

Different IRDs affect the vision in different ways and cause different patterns of symptoms. Vision loss tends to be progressive—gradually getting worse over time—and can lead to severe vision loss and in some cases, blindness.

Being diagnosed with any condition that causes vision loss can feel overwhelming. IRDs have the added element of being relatively rare and not as well understood as more common eye conditions.

If you have been diagnosed with an IRD, here are some steps you can take to protect the health of your eyes, learn more about your diagnosis, and potentially support other people who are living with IRDs

Work with your healthcare providers

IRDs are complex conditions and treatment will depend on many factors—including the specific IRD you have, your age, and the severity of your symptoms.

This generally means working with a multidisciplinary team of healthcare providers that may include an ophthalmologist, an IRD specialist (such as a retina specialist, a neuro ophthalmologist, or a pediatric ophthalmologist), and a low vision specialist. It may also include medical social workers and education specialists.

People with IRD will also work with a genetic counselor, a provider who specializes in genetics and genetic testing—which is key to getting an accurate diagnosis, applying to clinical trials, and understanding your treatment options. A genetic counselor can also help you understand the genetic risk of IRD for other people in your family.

Participate in patient registries

Research databases of people with IRDs are designed to share anonymous information within the IRD scientific community. This can help contribute to the understanding of these rare and life-altering conditions.

Connect with others who experience vision loss

No one knows what it is like to live with vision loss except for other people who are experiencing vision loss. Consider participating in a support group for people who have experienced vision loss—either from IRD or from other conditions.

Support groups can be a great source of emotional support. They also offer an opportunity to share ideas about coping with vision loss and a chance to help others who need support. Talk to your healthcare team about support groups in your area.

Prioritize your mental health

Mental health should be prioritized and is something you should regularly discuss with your healthcare team. While vision loss affects everyone differently, it often impacts a person’s mental health—many people experience anxiety, depression, social isolation, and loneliness.

This risk is even more pronounced among people who experience vision loss before the age of 65. While IRDs affect people of all ages, many people begin to experience symptoms at younger ages than other eye diseases.

Keep learning about IRDs

There is much research being done on IRDs and potential treatments for IRDs—and researchers are making progress. The first gene therapy to treat an IRD was approved by the FDA in 2017, and dozens more potential treatments are being investigated.

Article sources open article sources

Byron L. Lam, Bart P. Leroy, et al. Genetic testing and diagnosis of inherited retinal diseases. Orphanet Journal of Rare Diseases, 2021. Vol. 16.
PreventBlindness.org. Inherited Retinal Diseases (IRDs).
Annie Stuart. Inherited Retinal Diseases. American Academy of Ophthalmology. May 2018.
The Foundation Fighting Blindness. Genetic Testing For Retinal Degenerative Diseases: Information and Resources for Affected Individuals, Families and Health Care Providers.
The Foundation Fighting Blindness. My Retina Tracker Registry.
Lenore Dillon. The Who, What, When, Where, And Why of Support Groups for People with Vision Loss. VisionAware. May 9, 2021.
Centers for Disease Control and Prevention. Vision Loss and Mental Health.
Motokazu Tsujikawa, Yuko Wada, et al. Age at Onset Curves of Retinitis Pigmentosa. Clinical Sciences, 2008. Vol. 126, No. 3.
U.S. Food & Drug Administration. FDA approves novel gene therapy to treat patients with a rare form of inherited vision loss. December 18, 2017.
Mark E. Pennesi, Jacque L. Duncan, et al. Let’s Talk About Gene Therapy for Inherited Retinal Diseases. Retina Today. July/August 2021.

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