Living with Late-onset retinal degeneration
An inherited eye condition in adults with trouble seeing in the dark that later leads to loss of central vision.
Understanding Late-onset retinal degeneration
It begins with slow adjustment to the dark, night blindness, and deposits under the retina called drusen. In the sixth decade of life, the cone and rod cells break down, causing central vision loss. In late stages, abnormal new blood vessels or glaucoma may occur. It appears in adults and older adults.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Night blindness
- Drusen (deposits under the retina)
- Macular degeneration
- Central vision loss
- Abnormal new blood vessels under the retina
- Reduced sharp vision
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include eye disease specialists and genetic specialists.
- 3Consider genetic testing
Changes in C1QTNF5 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Prevent Blindness America
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
Changes in the C1QTNF5 gene cause this condition. It is autosomal dominant, meaning one changed copy of the gene is enough.
Also known as: autosomal dominant late-onset retinal degeneration; lord; retinal degeneration, late-onset, autosomal dominant
Patient organizations
- Prevent Blindness AmericaLate-onset retinal degeneration · United States
You are more than your diagnosis
Perspectives from people navigating life with Late-onset retinal degeneration.
Explore research for Late-onset retinal degeneration
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- Eligibility is confirmed by the study team
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