Living with Doyne honeycomb retinal dystrophy
An inherited eye condition in which small white spots build up under the retina and can slowly reduce vision in adulthood.
Understanding Doyne honeycomb retinal dystrophy
Small, round, white spots called drusen build up under the pigmented layer of the retina. Over time, the spots can grow and join together in a honeycomb pattern. The amount of vision loss varies. Symptoms usually begin in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Small white spots under the retina (drusen)
- Loss of vision
- Wavy or distorted vision (metamorphopsia)
- Changes in retinal color (pigment)
- Macular dystrophy (damage to the center of 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.
- 3Consider genetic testing
Changes in EFEMP1 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
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 American 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 changes in the EFEMP1 gene usually cause this condition. It is autosomal dominant, meaning one changed copy of the gene can cause it.
Also known as: dhrd; dominant drusen; dominant radial drusen; doyne honeycomb degeneration of retina; doyne's honeycomb choroiditis; drusen, radial, autosomal dominant
Patient organizations
- American Macular Degeneration FoundationDoyne honeycomb retinal dystrophy · United States
- Macular Degeneration FoundationDoyne honeycomb retinal dystrophy · United States
You are more than your diagnosis
Perspectives from people navigating life with Doyne honeycomb retinal dystrophy.
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