Living with Vitelliform macular dystrophy
A genetic eye condition that affects the center of the retina and can slowly blur central vision.
Understanding Vitelliform macular dystrophy
It affects the macula, a small area near the center of the retina that gives sharp central vision for reading, driving, and recognizing faces. A fatty yellow pigment builds up under the macula. Side vision and night vision are typically not affected. The early-onset form (Best disease) usually appears in childhood. The adult-onset form usually begins in mid-adulthood.
Signs & symptoms
GARD doesn't list a common-symptom list, but its summary describes these:
- Blurry central vision
- Distorted vision
- Slow loss of central vision
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- 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 explains that a yellow pigment (lipofuscin) builds up in cells under the macula and can damage them. It doesn't list a gene or inheritance pattern here.
Also known as: macular dystrophy, vitelliform; vitelliform dystrophy; vmd
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 Vitelliform macular dystrophy.
Explore research for Vitelliform macular dystrophy
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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