Living with X-linked cone-rod dystrophy 2
A slowly worsening eye condition, almost only in males, that mainly affects cone cells and causes blurry vision and light sensitivity.
Understanding X-linked cone-rod dystrophy 2
Nearly all affected people are male. Signs include lower sharpness of vision, nearsightedness, light sensitivity, and abnormal color vision, while side vision stays full. Rod cells show growing damage in some people. Age at start and severity vary.
Signs & symptoms
Symptoms vary from person to person. GARD describes these:
- Reduced sharpness of vision
- Nearsightedness (myopia)
- Sensitivity to light (photophobia)
- Abnormal color vision
- Changes in the macula's pigment layer
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
GARD says it is caused by changes mapped to chromosome Xq27 and follows X-linked inheritance.
Also known as: cod2; cone dystrophy 2, x-linked; cone dystrophy x-linked 2; cone dystrophy, progressive x-linked, 2; cone-rod dystrophy x-linked 2; cone-rod dystrophy, x-linked, 2
Patient organizations
- Prevent Blindness AmericaX-linked cone-rod dystrophy 2 · United States
You are more than your diagnosis
Perspectives from people navigating life with X-linked cone-rod dystrophy 2.
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- Eligibility is confirmed by the study team
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