Living with X-linked cone-rod dystrophy 1
A slowly worsening eye condition, more common in males, that mainly affects the cone cells used for color and sharp vision.
Understanding X-linked cone-rod dystrophy 1
It is more common in males. Cones help with color and detail. Some people also have more damage to rods, which help in low light. Symptoms can start at different ages and vary in severity.
Signs & symptoms
Symptoms vary from person to person. GARD describes these:
- Blurry vision
- Nearsightedness (myopia)
- Sensitivity to light (photophobia)
- Trouble telling colors apart
- Loss of side vision
- Changes in the central part of the retina
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 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
GARD says it follows an X-linked pattern of inheritance. It doesn't name a gene here.
Also known as: cod1; cone-rod dystrophy, x-linked, 1, x-linked recessive; cone-rod dystrophy, x-linked, type 1; cordx1; x-linked cone dystrophy 1; x-linked cone-rod dystrophy type 1
Patient organizations
- Foundation Fighting BlindnessX-linked cone-rod dystrophy 1 · United States
- Prevent Blindness AmericaX-linked cone-rod dystrophy 1 · United States
You are more than your diagnosis
Perspectives from people navigating life with X-linked cone-rod dystrophy 1.
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