Living with MELAS syndrome
A condition affecting the brain, nerves, and muscles, with stroke-like episodes, seizures, and muscle weakness.
Understanding MELAS syndrome
Signs most often appear in childhood after a period of normal development, but can begin at any age. Early symptoms include muscle weakness and pain, repeated headaches, loss of appetite, vomiting, and seizures. Most people have stroke-like episodes before age 40. Repeated episodes can gradually damage the brain.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Stroke-like episodes
- Seizures
- Migraine-like headaches
- Muscle weakness and muscle disease (myopathy)
- Poor coordination and trouble walking (ataxia)
- Memory loss and thinking problems (dementia)
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 brain and nervous system specialists, ear, nose, and throat specialists, 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, MitoAction and Muscular Dystrophy Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Ear, nose, and throat specialists (otolaryngologists); Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: United Mitochondrial Disease Foundation, MitoAction, Muscular Dystrophy Association
- 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 United Mitochondrial Disease Foundation 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
Changes in genes (also called variants) cause this condition. It is mitochondrial, meaning it is passed from mother to children through the mitochondria in egg cells.
Also known as: juvenile myopathy, encephalopathy, lactic acidosis, stroke; melas; melas - mitochondrial encephalopathy, lactic acidosis and stroke-like episodes; mitochondrial encephalomyopathy, lactic acidosis and stroke; mitochondrial encephalomyopathy, lactic acidosis and stroke-like episodes; mitochondrial encephalopathy, lactic acidosis, and stroke-like episodes
Patient organizations
- United Mitochondrial Disease FoundationMELAS syndrome · United States
- MitoActionMELAS syndrome · United States
- Muscular Dystrophy AssociationMELAS syndrome · United States
- Children's Cardiomyopathy FoundationCardiomyopathy · United States
- Epilepsy FoundationEpilepsy · United States
- The Foundation for Peripheral NeuropathyPeripheral neuropathy · United States
- Neuropathy Action FoundationPeripheral neuropathy · United States
You are more than your diagnosis
Perspectives from people navigating life with MELAS syndrome.
Explore research for MELAS syndrome
Explore actively recruiting MELAS syndrome studies with HealthSpark.
Find actively recruiting studies for MELAS syndrome with HealthSpark. Share your city to explore research near you.
- 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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