Living with Congenital Horner syndrome
A rare condition from birth with a small pupil, a drooping upper eyelid and less sweating on one side of the face.
Understanding Congenital Horner syndrome
It is caused by damage to the sympathetic nerves of the face. In rare cases the colored part of the eye (the iris) lacks pigment.
Signs & symptoms
Symptoms vary from person to person. GARD's summary lists these:
- Small pupil (miosis)
- Drooping upper eyelid (ptosis)
- No sweating on the face (anhidrosis)
- Lighter iris color, in rare cases
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.
Care & treatment
- Care team
- Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- 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 Horner's Syndrome: Awareness, Action and Advocacy Foundation
- 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 damage to the sympathetic nerves of the face. GARD lists autosomal dominant inheritance for the inherited form.
Also known as: congenital claude bernard horner syndrome; congenital claude-bernard-horner syndrome; congenital horner syndrome (disease)
Patient organizations
- Horner's Syndrome: Awareness, Action and Advocacy FoundationCongenital Horner syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Congenital Horner syndrome.
Explore research for Congenital Horner syndrome
Explore actively recruiting Congenital Horner syndrome studies with HealthSpark.
Find actively recruiting studies for Congenital Horner 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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