Living with Progressive external ophthalmoplegia
A condition that slowly weakens the eye muscles and causes drooping eyelids, usually starting in adulthood.
Understanding Progressive external ophthalmoplegia
It typically appears in adults between ages 18 and 40. The first sign is usually drooping eyelids (ptosis), followed by weakness or paralysis of the muscles that move the eye. People may also have general muscle weakness. Some people have extra signs, and this is called progressive external ophthalmoplegia plus (PEO+).
Signs & symptoms
Symptoms vary from person to person. GARD describes these features:
- Drooping eyelids (ptosis)
- Weak eye muscles (ophthalmoplegia)
- Muscle weakness in the neck, arms, or legs
- Tiredness or weakness with exercise
- Trouble swallowing (dysphagia)
- Hearing loss, nerve damage, or poor coordination in PEO+
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
Muscular Dystrophy Association, 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: Muscular Dystrophy Association, 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 Muscular Dystrophy 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 lists mitochondrial inheritance for this condition, meaning it relates to the cell's energy-making parts. It doesn't name a gene here.
Also known as: chronic progressive external ophthalmoplegia; chronic progressive external ophthalmoplegia [ambiguous]; chronic progressive ophthalmoplegia; cpeo - chronic progressive external ophthalmoplegia; external ophthalmoplegia, progressive; graefe's disease
Patient organizations
- Muscular Dystrophy AssociationProgressive external ophthalmoplegia · 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 Progressive external ophthalmoplegia.
Explore research for Progressive external ophthalmoplegia
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