Living with Adult-onset foveomacular vitelliform dystrophy
An eye condition that affects the macula, with blurred or distorted vision that may slowly lead to loss of central vision.
Understanding Adult-onset foveomacular vitelliform dystrophy
It affects the macula, the part of the retina that gives sharp central vision. A fatty yellow pigment builds up in cells under the macula and can slowly damage them. Some people never have symptoms. Others slowly develop blurred or distorted vision that can progress to central vision loss.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Blurred vision
- Distorted vision
- Loss of part of the field of vision
- Trouble seeing colors
- Reduced vision (visual impairment)
- Yellow spot in the macula (vitelliform lesion)
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 Macular Degeneration 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 it was once thought to be mainly genetic, with changes in genes such as PRPH2, BEST1, IMPG1, and IMPG2. Newer studies suggest the genetic cause isn't found in most cases, and it sometimes runs in families in an autosomal dominant way.
Also known as: adult onset vitelliform dystrophy; adult vitelliform macular dystrophy; adult-onset foveomacular dystrophy; adult-onset foveomacular dystrophy with choroidal neovascularization; adult-onset vitelliform macular dystrophy; aofmd
Patient organizations
- Macular Degeneration FoundationAdult-onset foveomacular vitelliform dystrophy · United States
- Prevent Blindness AmericaAdult-onset foveomacular vitelliform dystrophy · United States
You are more than your diagnosis
Perspectives from people navigating life with Adult-onset foveomacular vitelliform dystrophy.
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