Living with Choroideremia
A genetic eye condition, mainly in males, where vision slowly worsens, starting with trouble seeing at night.
Understanding Choroideremia
The first sign is usually night blindness, which can start in early childhood. Then side vision narrows (tunnel vision) and sharpness of vision decreases. These changes come from ongoing loss of cells in the retina and the nearby blood vessel layer (choroid). Vision loss gets worse over time, though the pace varies. GARD says this leads to blindness, most often in late adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Night blindness (trouble seeing in dim light)
- Narrowing of side vision (tunnel vision)
- Loss of sharp vision
- Nearsightedness (myopia)
- Changes in the retina's color (pigment)
- Gradual loss of 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
Specialists who may be involved include eye disease specialists and genetic specialists.
- 3Consider genetic testing
Changes in CHM are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 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
GARD says changes in the CHM gene cause this condition. It is X-linked, which means the gene is on the X chromosome.
Also known as: chm; chorioretinal scalloped atrophy; progressive choroidal atrophy; tapetochoroidal dystrophy
Patient organizations
- Foundation Fighting BlindnessChoroideremia · United States
- Choroideremia Research FoundationChoroideremia · United States
- Prevent Blindness AmericaChoroideremia · United States
You are more than your diagnosis
Perspectives from people navigating life with Choroideremia.
Explore research for Choroideremia
Explore actively recruiting Choroideremia studies with HealthSpark.
Find actively recruiting studies for Choroideremia 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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