Living with Coats disease
An eye condition, usually in one eye, where blood vessels in the retina develop abnormally and can cause vision loss.
Understanding Coats disease
Most people begin to have symptoms in childhood. Early signs can include vision loss, crossed eyes (strabismus), and a white mass in the pupil (leukocoria). Over time it may lead to retinal detachment, glaucoma, and cataracts. In most cases only one eye is affected.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Vision loss
- Crossed eyes (strabismus)
- White glow in the pupil (leukocoria)
- Retinal detachment
- Glaucoma
- Cloudy lens (cataract)
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, eye disease specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Jack McGovern Coats' Disease Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Jack McGovern Coats' Disease Foundation
- 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 Jack McGovern Coats' Disease Foundation and other patient organizations
- 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 Coats disease is not inherited and the cause is not known. Some cases may be due to acquired (somatic) changes in the NDP gene.
Also known as: coats syndrome; coats' disease; coats' syndrome; congenital retinal telangiectasia; exudative retinopathy; leber miliary aneurysm
Patient organizations
- Jack McGovern Coats' Disease FoundationCoats disease · United States
- Pediatric Retinal Research FoundationCoats disease · United States
You are more than your diagnosis
Perspectives from people navigating life with Coats disease.
Explore research for Coats disease
Explore actively recruiting Coats disease studies with HealthSpark.
Find actively recruiting studies for Coats disease 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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