Living with Stargardt disease
A genetic eye condition that slowly causes vision loss in the center of the retina, usually starting in youth.
Understanding Stargardt disease
It affects the macula, a small area near the center of the retina that is needed for reading, driving, and recognizing faces. A fatty yellow pigment called lipofuscin builds up under the macula and can damage cells needed for clear vision. People may have trouble with night vision and color vision. Signs usually appear between late childhood and early adulthood and worsen over time.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Blurry or less clear vision
- Central blind spot
- Trouble with night vision
- Changes in color vision
- Flashes of light (photopsia)
- Changes in the macula
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.
- 4Connect with expert centers
Foundation Fighting Blindness may keep lists of experts for this condition.
Care & treatment
- Care team
- Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Foundation Fighting Blindness
- 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 Foundation Fighting Blindness 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
Changes in genes (variants) cause this condition. It can be inherited in an autosomal dominant or autosomal recessive pattern. GARD doesn't list which gene here.
Also known as: familial juvenile macular degeneration syndrome; ffm; ffm - fundus flavimaculatus; fundus flavimaculatus; stargardt 1; stargardt disease, autosomal recessive
Patient organizations
- Foundation Fighting BlindnessStargardt disease · United States
- American Macular Degeneration FoundationStargardt disease · United States
- BrightFocus FoundationStargardt disease · United States
- Macular Degeneration FoundationStargardt disease · United States
- Prevent Blindness AmericaStargardt disease · United States
You are more than your diagnosis
Perspectives from people navigating life with Stargardt disease.
Explore research for Stargardt disease
Explore actively recruiting Stargardt disease studies with HealthSpark.
Find actively recruiting studies for Stargardt disease with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- 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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