Living with Glaucoma of childhood
An early-onset glaucoma with high eye pressure that progresses quickly and can damage the optic nerve if untreated.
Understanding Glaucoma of childhood
The raised pressure can damage the optic nerve, and untreated it can cause substantial vision loss. It is usually noticed in childhood and the teen years.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- High eye pressure
- Loss of side (peripheral) vision
- Damage to the optic nerve
- Reduced vision
- Differences in the iris
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 rare disease patient organizations for support
- 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
Changes in genes cause this condition. It is inherited in an autosomal dominant way, which means one changed copy of a gene can be enough. GARD does not name the gene.
Also known as: childhood glaucoma; childhood glaucoma (disease); developmental glaucoma; glaucoma (disease) of childhood; infantile glaucoma; joag
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Glaucoma of childhood.
Explore research for Glaucoma of childhood
Explore actively recruiting Glaucoma of childhood studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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- 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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