Living with Cone-rod dystrophy
A group of related eye conditions in which the retina's light-sensing cells slowly break down, causing vision loss that worsens over time.
Understanding Cone-rod dystrophy
The light-sensing cells of the retina gradually break down. First signs often appear in childhood: less sharp vision and light sensitivity. Color vision problems, central blind spots and some loss of side vision follow, then night blindness. There are more than 30 types. It can occur alone or as part of a syndrome.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Less sharp vision
- Sensitivity to light (photophobia)
- Color vision problems
- Blind spots in the center of vision
- Night blindness
- Loss of side (peripheral) 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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Foundation Fighting Blindness may keep lists of experts for this condition.
Care & treatment
- Care team
- Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Foundation Fighting Blindness
- 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 Foundation Fighting Blindness and other patient organizations
- 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
More than 30 types exist, distinguished by their genetic cause. They can be autosomal recessive, autosomal dominant or X-linked.
Also known as: cone rod dystrophy; cone-rod degeneration; cone-rod retinal dystrophy; cone/cone-rod dystrophy; crd; prph2-related cone-rod dystrophy
Patient organizations
- Foundation Fighting BlindnessCone-rod dystrophy · United States
- Curing Retinal Blindness FoundationCone-rod dystrophy · United States
- Prevent Blindness AmericaCone-rod dystrophy · United States
- The Vision of Children FoundationCone-rod dystrophy · United States
You are more than your diagnosis
Perspectives from people navigating life with Cone-rod dystrophy.
Explore research for Cone-rod dystrophy
Explore actively recruiting Cone-rod dystrophy studies with HealthSpark.
Find actively recruiting studies for Cone-rod dystrophy with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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