Living with X-linked congenital stationary night blindness
An eye condition present from birth that causes trouble seeing in low light and other vision problems that stay stable over time.
Understanding X-linked congenital stationary night blindness
Other problems include light sensitivity, reduced sharpness, severe nearsightedness, eye shaking (nystagmus), and eyes that point in different directions. Color vision is usually not affected. Vision problems are present from birth and tend to stay stable over time. There are complete and incomplete forms.
Signs & symptoms
GARD doesn't list a common-symptom list, but its summary describes these:
- Trouble seeing in low light (night blindness)
- Sensitivity to light (photophobia)
- Reduced sharpness of vision
- Severe nearsightedness (high myopia)
- Quick, jerky eye movements (nystagmus)
- Eyes that don't line up (strabismus)
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 follows X-linked inheritance and the two types are told apart by their genetic causes and by a retina test called an electroretinogram.
Also known as: congenital stationary night blindness, x-linked; x-linked csnb; xlcsnb
Patient organizations
- Foundation Fighting BlindnessX-linked congenital stationary night blindness · United States
You are more than your diagnosis
Perspectives from people navigating life with X-linked congenital stationary night blindness.
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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