Living with Channelopathy-associated congenital insensitivity to pain, autosomal recessive
A condition in which a person cannot feel pain from birth, which raises the risk of unnoticed injuries.
Understanding Channelopathy-associated congenital insensitivity to pain, autosomal recessive
From birth, people do not feel pain when injured. They can feel the difference between sharp and dull, and hot and cold, but cannot sense that, for example, a hot drink is burning their tongue. Pain is a vital signal that helps people avoid danger, so people who cannot feel pain have more injuries.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- No sense of pain
- Less ability to sweat
- Reduced or lost sense of smell
- Loss of bladder control
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 and genetic specialists.
- 3Consider genetic testing
Changes in SCN9A are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 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); 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
Changes in the SCN9A gene cause this condition. GARD lists both autosomal recessive and autosomal dominant inheritance.
Also known as: asymbolia for pain; channelopathy-associated cip; congenital analgesia, autosomal recessive; congenital insensitivity to pain-anosmia-neuropathic arthropathy; insensitivity to pain, channelopathy-associated; insensitivity to pain, congenital
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 Channelopathy-associated congenital insensitivity to pain, autosomal recessive.
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