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Eye and hearing diseases

Vogt-Koyanagi-Harada disease (VKH)

A rare disease in which the immune system is thought to attack the body's color-giving cells. It most often causes inflammation and vision loss in both eyes. The ears, skin and the linings of the brain can also be affected.

Not part of the panel of Türkiye's National Newborn Screening Programme (heel-prick test). Source

This page is translated from the Turkish original.

This disease is followed through the “Eye and hearing diseases” group.

Understanding the disease

This section has not yet been reviewed by a physician. It summarises patient information from sources such as MedlinePlus, Orphanet and the NHS in plain language. The disease can differ from person to person; talk to your doctor about diagnosis and treatment.

What happens in this disease?

The cause is not fully known. It is thought that the immune system mistakenly attacks the color-giving cells. The eyes, the inner ear, the skin and the linings around the brain are affected. Inflammation occurs in the eye; this is called uveitis. The disease usually begins between the ages of 30 and 40.

Which symptoms can occur?

The disease first begins with symptoms such as headache, then the eye signs follow.

  • Headache, eye pain, dizziness and nausea (at the start)
  • Blurred vision and vision loss, usually in both eyes (common)
  • Detachment of the retina
  • Hearing loss and ringing in the ears
  • Stiff neck
  • White patches on the skin, hair loss, whitening of the eyelashes and eyebrows (in later stages)
  • Cataract or raised eye pressure (sometimes)

How is it diagnosed?

The diagnosis is usually made by an eye doctor. There must be inflammation in both eyes and no other eye disease or eye injury. The blood vessels in the eye are examined with dye imaging and ultrasound. If needed, fluid is taken from the lower back to examine the linings of the brain.

Treatment and care

Treatment aims to suppress the inflammation quickly. First, high-dose cortisone medicines are given. After that, medicines that suppress the immune system are usually added. Early and adequate treatment is important. With treatment, vision and hearing usually improve. Cataract and raised eye pressure are followed up separately. The doctor who follows the disease decides which treatment is suitable.

For the family: inheritance and genetic counselling

This disease is not an inherited disease passed directly from parents to children. Some people may have a genetic tendency. However, other factors are also needed for the disease to appear. Rare families have been reported in which it was seen in brothers and sisters or in twins. You can ask your doctor about anything on your mind.

Source: NORD: Vogt-Koyanagi-Harada Disease · Orphanet: Vogt-Koyanagi-Harada disease (ORPHA:3437)

Key facts

How is it inherited?
Multigenic / multifactorial
When does it usually start?
Any age
Gene(s) involved
FAS, HLA-DRB1, PTPN22
Reliable sources
Orphanet

These facts are taken from Orphanet and MedlinePlus records (last checked: October 7, 2026). Frequency values are approximate ranges.

You are not alone: patient associations in Türkiye

Non-profit patient and family organizations in Türkiye working on this disease or disease group. Links are for information; Doktorclub is not affiliated with these organizations and does not endorse them.

We could not find a patient association specific to this disease.

For all rare diseases: Nadir Hastalıklar Federasyonu

Support and help

Doktorclub does not diagnose, recommend treatments or refer you to hospitals or doctors. These pages are meant to help you talk with your doctor.

News about VKH disease

Clinical trials (ClinicalTrials.gov)

A clinical trial is a regulated study that tests whether a new treatment is safe and whether it works, in patients who volunteer. Most trials look for a certain age, genetic change and health condition. Taking part is voluntary.

This list is not a treatment recommendation. Treatments tested in phase 1–3 trials are investigational (experimental): their efficacy and safety have not yet been proven and they are not approved treatments. Taking part depends on each trial’s criteria and a physician’s assessment; the first step is to talk to the doctor who manages your care.

Questions you can ask your doctor

  • Could this trial be suitable for us?
  • If we take part, how would current treatment and check-ups be affected?
  • Where does the trial take place, and how are travel and accommodation handled?
  • What happens if we want to leave the trial?

ClinicalTrials.gov lists 1 active interventional study for this disease. 1 is recruiting now; none has a site in Türkiye. Last checked: October 7, 2026.

Selected records (studies with a site in Türkiye first):

See all studies on ClinicalTrials.gov · Joining clinical trials

Eye and hearing diseases: other news

Medical codes (for talking with your doctor and finding sources)

These codes identify the disease in international classifications and databases. They can help when you talk with your doctor or look for reliable sources.

Orphanet code: ORPHA:3437

No separate ICD-11 code; WHO classifies this disease under: 9A96.1

Codes checked against WHO ICD-11 and Orphanet on October 7, 2026.

This page provides general information and does not replace diagnosis or treatment. Talk to your doctor about symptoms, diagnosis and treatment.

The information on these pages is for general information only and does not replace medical advice. Talk to your doctor about diagnosis and treatment decisions. In an emergency in Türkiye, call 112.

Every update is based on an open source and labeled with its level of evidence. No advertising and no drug brand names. Our scientific principles

This page was translated from Turkish by the Doktorclub editorial team.