Living with Retinal cone dystrophy type 1
An inherited eye condition affecting the cells that help with seeing color and fine detail, with sensitivity to light.
Understanding Retinal cone dystrophy type 1
People with this condition may have trouble seeing clearly, be sensitive to light, and have trouble telling colors apart. They usually do not have problems seeing in the dark or losing side vision. There are different types of cone dystrophy, and some affect the center of the eye more than the edges.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary describes these:
- Trouble seeing clearly
- Sensitivity to light
- Trouble telling colors apart
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
Your doctor may refer you to a specialist who knows rare conditions.
- 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
- A doctor familiar with rare conditions, plus specialists as needed
- 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
- 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
GARD says it can be passed down in families and can be caused by gene changes. It lists autosomal dominant inheritance, so one changed copy of a gene can be enough.
Also known as: cone dystrophy autosomal dominant; retinal cone degeneration; retinal cone dystrophy-1
Patient organizations
- Foundation Fighting BlindnessRetinal cone dystrophy type 1 · United States
You are more than your diagnosis
Perspectives from people navigating life with Retinal cone dystrophy type 1.
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