Living with Locked-in syndrome
A rare nerve condition with complete paralysis of voluntary muscles except the eyes, while the person stays aware and can think.
Understanding Locked-in syndrome
People are conscious and can think and reason but cannot speak or move. They can use vertical eye movements and blinking to communicate. It can occur at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Paralysis of voluntary muscles except the eyes
- Inability to speak
- Double vision
- Excess saliva
- Feeding difficulties
- Voice changes
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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 may be caused by brain stem stroke, traumatic brain injury, tumors, bleeding, diseases that destroy myelin (like multiple sclerosis), infection, or medication overdose.
Also known as: cerebromedullospinal disconnection; locked in syndrome; locked-in state
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Locked-in syndrome.
Explore research for Locked-in syndrome
Explore actively recruiting Locked-in syndrome studies with HealthSpark.
Find actively recruiting studies for Locked-in syndrome with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- 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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