Living with Superior limbic keratoconjunctivitis
A long-lasting eye condition that causes burning, redness, and irritation, usually without losing vision.
Understanding Superior limbic keratoconjunctivitis
It affects the clear layer that covers the eyeball and lines the eyelids, and the area above the cornea. Burning, redness, and irritation develop slowly over 1 to 10 years. Vision usually stays intact. The cause is unknown. It may relate to loose conjunctiva, linked to factors such as thyroid eye disease, tight upper eyelids, or prominent eyeballs.
Signs & symptoms
Symptoms vary from person to person. GARD describes these:
- Burning in the eye
- Redness
- Irritation
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
GARD says the cause is unknown. It may follow looseness of the eye's covering, which can be linked to thyroid eye disease, tight upper eyelids, or prominent eyeballs.
Also known as: slk; slk - superior limbic keratoconjunctivitis; superior limbal keratoconjunctivitis; superior limbic keratitis; theodore superior limbic keratoconjunctivitis; theodore syndrome
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 Superior limbic keratoconjunctivitis.
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