Living with X-linked cone-rod dystrophy 3
An eye condition that mostly affects cone cells, causing blurry vision, light sensitivity, and trouble with colors.
Understanding X-linked cone-rod dystrophy 3
Sometimes the rods, which help us see in low light, are affected too. People often have trouble seeing clearly, are sensitive to bright light, and have trouble seeing colors. These can come all at once or develop over time.
Signs & symptoms
GARD lists these symptoms as less common:
- Blurry vision
- Sensitivity to bright light
- Trouble seeing colors
- Quick, jerky eye movements (nystagmus)
- Astigmatism
- Retinal detachment
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.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- 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
This condition is caused by a change in the CACNA1F gene and follows an X-linked pattern of inheritance.
Also known as: cone-rod dystrophy, x-linked, 3, x-linked recessive; cone-rod dystrophy, x-linked, type 3; cordx3; x-linked cone-rod dystrophy type 3
Patient organizations
- Prevent Blindness AmericaX-linked cone-rod dystrophy 3 · United States
You are more than your diagnosis
Perspectives from people navigating life with X-linked cone-rod dystrophy 3.
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