GlobalDiagnosis and screening
International consensus guideline published for eye imaging in VKH disease
A panel of international eye specialists prepared an imaging guideline for VKH.
Eye and hearing diseases
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.
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.
The disease first begins with symptoms such as headache, then the eye signs follow.
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 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.
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)
These facts are taken from Orphanet and MedlinePlus records (last checked: October 7, 2026). Frequency values are approximate ranges.
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
Doktorclub does not diagnose, recommend treatments or refer you to hospitals or doctors. These pages are meant to help you talk with your doctor.
GlobalDiagnosis and screening
A panel of international eye specialists prepared an imaging guideline for VKH.
TürkiyeResearch and clinical trials
In Ankara, eye doctors followed five children with VKH disease over a long period.
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.
Questions you can ask your doctor
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):
Non-drug study (device, procedure, care, etc.)RecruitingNCT03399175
See all studies on ClinicalTrials.gov · Joining clinical trials
TürkiyeSGK and reimbursement
A drug used for a rare disease affecting the optic nerve has been added to reimbursement coverage.
USAResearch and clinical trials
A two-year, placebo-controlled study was carried out at 7 centers in the USA.
TürkiyeResearch and clinical trials
Gazi University studied the eyes of 27 children.
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.