Living with Leber optic atrophy
An inherited condition that causes vision loss, mostly in central vision, usually beginning in the teens or twenties.
Understanding Leber optic atrophy
It usually begins in the teens or twenties, with blurry or cloudy vision in one or both eyes. It mainly affects central vision, which is needed for reading, driving, and recognizing faces. Males are affected much more often than females, for unknown reasons.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Blurred vision
- Central blind spot (central scotoma)
- Damage to the optic nerve (optic atrophy)
- Progressive loss of vision
- Slow decrease in sharpness of vision
- Twisting of small blood vessels in 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
Specialists who may be involved include eye disease specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
United Mitochondrial Disease Foundation and MitoAction may keep lists of experts for this condition.
Care & treatment
- Care team
- Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: United Mitochondrial Disease Foundation, MitoAction
- 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 Leber's Hereditary Optic Neuropathy 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
It is caused by changes in mitochondrial genes, which are passed down in a mitochondrial pattern of inheritance. Vision loss comes from damage to cells in the optic nerve.
Also known as: leber hereditary optic atrophy; leber hereditary optic neuropathy; leber optic atrophy features; leber optic degeneration; leber's disease; leber's hereditary optic neuropathy
Patient organizations
- Leber's Hereditary Optic NeuropathyLeber optic atrophy · United States
- United Mitochondrial Disease FoundationMitochondrial diseases · United States
- MitoActionMitochondrial diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Leber optic atrophy.
Explore research for Leber optic atrophy
Explore actively recruiting Leber optic atrophy studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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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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