Living with Congenital trigeminal anesthesia
A rare condition in which part or all of the face and eye surface cannot feel touch from birth.
Understanding Congenital trigeminal anesthesia
Because the surface of the eye (cornea) cannot feel, people usually have repeated painless eye infections, painless cloudy areas on the cornea, or slow-healing sores on the facial skin and the lining of the mouth or nose.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary mentions these:
- Repeated painless eye infections
- Painless cloudy areas on the cornea
- Slow-healing sores on the face
- Sores inside the mouth or nose
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 brain and nervous system specialists, eye disease specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
The Foundation for Peripheral Neuropathy may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: The Foundation for Peripheral Neuropathy
- 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 The Foundation for Peripheral Neuropathy 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 genes cause this condition. It doesn't name a gene.
Also known as: trigeminal anesthesia, familial
Patient organizations
- The Foundation for Peripheral NeuropathyPeripheral neuropathy · United States
- Neuropathy Action FoundationPeripheral neuropathy · United States
You are more than your diagnosis
Perspectives from people navigating life with Congenital trigeminal anesthesia.
Explore research for Congenital trigeminal anesthesia
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