Living with Ocular cicatricial pemphigoid
A rare, long-lasting autoimmune condition that mainly affects the eyes, starting with irritated, red, watery eyes.
Understanding Ocular cicatricial pemphigoid
It is a form of mucous membrane pemphigoid. In early stages, people often have ongoing or returning conjunctivitis with tearing, irritation, burning, or mucus drainage. Other mucous membranes and the skin may also be involved.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Based on its summary, early features may include:
- Ongoing or returning conjunctivitis (pink eye)
- Tearing
- Eye irritation and burning
- Mucus drainage from the eyes
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.
- 4Connect with expert centers
Autoimmune Association, International Pemphigus & Pemphigoid Foundation and Global Autoimmune Institute may keep lists of experts for this condition.
Care & treatment
- Care team
- Eye disease specialists (ophthalmologists)
- Expert care
- Expert lists: Autoimmune Association, International Pemphigus & Pemphigoid Foundation, Global Autoimmune Institute
- 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 Autoimmune Association 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 the exact cause is unknown. It lists autosomal dominant inheritance, where one changed copy of a gene can be enough.
Also known as: cicatricial pemphigoid with ocular involvement; ocp; ocp - ocular cicatricial pemphigoid; ocular pemphigoid
Patient organizations
- Autoimmune AssociationOcular cicatricial pemphigoid · United States
- International Pemphigus & Pemphigoid FoundationOcular cicatricial pemphigoid · United States
- Global Autoimmune InstituteOcular cicatricial pemphigoid · United States
You are more than your diagnosis
Perspectives from people navigating life with Ocular cicatricial pemphigoid.
Explore research for Ocular cicatricial pemphigoid
Explore actively recruiting Ocular cicatricial pemphigoid studies with HealthSpark.
Find actively recruiting studies for Ocular cicatricial pemphigoid with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
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- 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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