Living with Dominant hereditary optic atrophy
An inherited eye condition in which the optic nerves break down, causing vision loss and trouble seeing colors, usually starting in childhood.
Understanding Dominant hereditary optic atrophy
It usually begins before age 10 and can cause vision loss and problems seeing colors. Vision can range from normal to legal blindness. Some people also have hearing loss, muscle weakness, nerve damage outside the brain and spinal cord, an illness that resembles multiple sclerosis, or problems using their legs.
Signs & symptoms
GARD doesn't list specific symptoms for this condition separately, but the summary describes these features:
- Vision loss
- Trouble seeing colors
- Hearing loss in some people
- Muscle weakness in some people
- Nerve damage outside the brain and spinal cord
- Problems using the legs in some people
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 Autosomal Dominant Optic Atrophy Association 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 changes in a person's genes cause this condition. It can be autosomal dominant (one changed copy is enough) or mitochondrial (passed down through the mother's cells).
Also known as: adoa; autosomal dominant optic atrophy; doa; optic atrophy, autosomal dominant
Patient organizations
- Autosomal Dominant Optic Atrophy AssociationDominant hereditary optic atrophy · United States
- Prevent Blindness AmericaDominant hereditary 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 Dominant hereditary optic atrophy.
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