Living with Vogt-Koyanagi-Harada disease
A condition that affects the eyes, ears, nervous system, and skin in phases, with eye inflammation and hearing changes.
Understanding Vogt-Koyanagi-Harada disease
Symptoms come in phases. Early on, there are headaches, eye pain, and dizziness. Then hearing loss and eye inflammation (panuveitis) follow. Later symptoms can include white patches of skin and hair, hair loss, cataracts, and glaucoma. It can begin at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Headache
- Blurred vision
- Eye inflammation (iridocyclitis)
- Patchy loss of skin color (vitiligo)
- White patches of hair or early graying
- Cataract and retinal detachment
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 and eye disease specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Autoimmune Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Eye disease specialists (ophthalmologists)
- Expert care
- Expert lists: Autoimmune 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 Autoimmune Association
- 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 the exact cause is unknown. Symptoms are thought to come from an abnormal immune response to a viral infection, and genetic factors may play a role.
Also known as: harada disease; harada's disease; uveomenigitic syndrome; uveomeningoencephalitic syndrome; vkh - vogt-koyanagi-harada syndrome; vogt-koyanagi syndrome
Patient organizations
- Autoimmune AssociationVogt-Koyanagi-Harada disease · United States
You are more than your diagnosis
Perspectives from people navigating life with Vogt-Koyanagi-Harada disease.
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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