Living with Retinopathy of prematurity
An eye condition in babies born early, where abnormal blood vessels grow in the retina and can scar it.
Understanding Retinopathy of prematurity
It affects both eyes and can be mild or severe. It involves new, abnormal blood vessel growth, scarring, and sometimes retinal detachment, and eventually blindness. GARD lists too much oxygen and too little oxygen as causes. It shows up in the newborn and infant period.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Abnormal blood vessels in the retina
- Premature birth
- Small size for gestational age
- Scarring of the retina
- Retinal detachment
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.
- 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)
- 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 Pediatric Retinal Research 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 lists too much oxygen (oxygen toxicity) and too little oxygen (hypoxia) as causes. It occurs in babies born early.
Also known as: premature retinopathy; retrolental fibroplasia; rlf - retrolental fibroplasia; rop; rop - retinopathy of prematurity; terry syndrome
Patient organizations
- Pediatric Retinal Research FoundationRetinopathy of prematurity · United States
- Prevent Blindness AmericaRetinopathy of prematurity · United States
You are more than your diagnosis
Perspectives from people navigating life with Retinopathy of prematurity.
Explore research for Retinopathy of prematurity
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- Eligibility is confirmed by the study team
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