Living with Retinitis punctata albescens
A slowly worsening inherited eye condition with white spots on the retina that starts with night blindness in childhood.
Understanding Retinitis punctata albescens
It runs in families. Night blindness usually starts in childhood, and some people also lose sharp vision. GARD notes that significant vision loss has been reported in the fifth and sixth decades of life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Night blindness (nyctalopia)
- Loss of side vision
- Central blind spot (central scotoma)
- Extreme sensitivity to light (photophobia)
- Narrowed blood vessels in the retina
- Yellow-white spots on 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.
- 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
- 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 lists both autosomal dominant and autosomal recessive inheritance. It does not name a gene.
Also known as: rpa
Patient organizations
- Foundation Fighting BlindnessRetinitis punctata albescens · United States
You are more than your diagnosis
Perspectives from people navigating life with Retinitis punctata albescens.
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