Living with Cystoid macular edema
An inherited eye condition affecting the macula, the central part of the retina, that can start in childhood.
Understanding Cystoid macular edema
GARD describes a form passed down in an autosomal dominant way. It can involve wasting (atrophy) of the macula, crossed or misaligned eyes (strabismus), and sometimes a pattern of retinitis pigmentosa around the center of the retina. GARD lists onset in childhood.
Signs & symptoms
GARD doesn't list a detailed symptom list. Based on its summary, features include:
- Wasting of the macula (macular atrophy)
- Crossed or misaligned eyes (strabismus)
- Retinitis pigmentosa around the center of the retina
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
GARD says changes in genes cause this condition. It is inherited in an autosomal dominant way, so a changed copy of the gene from one parent can be enough.
Also known as: autosomal dominant cystoid macular edema; autosomal dominant cystoid macular oedema; cme - cystoid macular edema; cystoid macular dystrophy; dcmd; familial macular edema
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 Cystoid macular edema.
Explore research for Cystoid macular edema
Explore actively recruiting Cystoid macular edema studies with HealthSpark.
Find actively recruiting studies for Cystoid macular edema with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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