Living with Cone dystrophy, X-linked, with tapetal-like sheen
A rare X-linked eye condition with a greenish-golden sheen on the retina, gradual vision loss and color vision problems.
Understanding Cone dystrophy, X-linked, with tapetal-like sheen
People may have a greenish-golden sheen across large areas of the retina. Symptoms usually start in a person's 30s. In the dark, some people have the Mizuo-Nakamura phenomenon, where the retina seems to fade and show other structures. Some develop a detached retina.
Signs & symptoms
Symptoms vary from person to person. GARD's summary lists these:
- Gradual vision loss
- Color vision problems
- Trouble seeing in the dark
- Greenish-golden sheen in the retina
- Detached retina in some cases
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 rare disease patient organizations for support
- 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 doesn't name a gene here. It is inherited in an X-linked pattern.
Also known as: x-linked recessive cone dystrophy with tapetal-like sheen
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Cone dystrophy, X-linked, with tapetal-like sheen.
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