Living with Persistent placoid maculopathy
An eye condition with white plaque-like spots in the macula of both eyes that can lead to loss of central vision.
Understanding Persistent placoid maculopathy
The macula is the center of the retina, used for sharp vision. Vision is generally good until abnormal blood vessels or pigment changes develop. The spots fade over months or years, but the blood vessel changes stay and can lead to loss of central vision. It occurs in adults and older adults.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Reduced clarity of vision
- Abnormal macula
- Abnormal blood vessel growth under the retina
- Distorted vision (less common)
- Flickering spots in vision (less common)
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.
- 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)
- 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 doesn't describe a cause for this condition yet.
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 Persistent placoid maculopathy.
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