Living with Familial pterygium of the conjunctiva
A noncancerous pink growth that spreads from the white of the eye onto the cornea and may affect vision.
Understanding Familial pterygium of the conjunctiva
It usually starts on the inner side of the eye and grows toward the pupil. Depending on its size, it can cause vision problems. Long-term exposure to ultraviolet light has been linked to it. In this form it runs in families, usually starting in the teen or adult years.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Pink growth on the eye surface
- Vision problems
- Clouding of the cornea
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 rare disease patient organizations for support
- 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
It runs in families in an autosomal dominant way, which means one changed copy of a gene is enough. GARD says long-term UV light exposure has also been linked to it, and doesn't name a gene.
Also known as: autosomal dominant pterygium of conjunctiva; pterygium of conjunctiva and cornea; pterygium of conjunctiva familial form
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Familial pterygium of the conjunctiva.
Explore research for Familial pterygium of the conjunctiva
Explore actively recruiting Familial pterygium of the conjunctiva studies with HealthSpark.
Find actively recruiting studies for Familial pterygium of the conjunctiva 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
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Familial pterygium of the conjunctiva studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Familial pterygium of the conjunctiva
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Familial pterygium of the conjunctiva experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.