Living with Hereditary insensitivity to pain with anhidrosis
An inherited condition in which a person cannot feel pain or temperature and does not sweat.
Understanding Hereditary insensitivity to pain with anhidrosis
It is also called hereditary sensory and autonomic neuropathy type IV. It appears at birth or in infancy. Not feeling pain often leads to repeated injuries, such as biting the tongue, lips, or fingers. Injuries heal slowly and can lead to bone infections or joint damage. Little sweating can cause very high fevers and seizures brought on by fever. About half of people show hyperactivity or emotional instability, and many have intellectual disability.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Cannot feel pain or temperature
- Little or no sweating (anhidrosis)
- Repeated, severe injuries
- Slow healing of skin and bone injuries
- Repeated fevers
- Intellectual disability
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 NTRK1 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
Hereditary Neuropathy Foundation Inc. and 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: Hereditary Neuropathy Foundation Inc., 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 Hereditary Neuropathy Foundation Inc. 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
It is caused by changes in the NTRK1 gene. It is autosomal recessive, so a child inherits a changed copy of the gene from each parent.
Also known as: autosomal recessive hereditary sensory neuropathy; cip-anhidrosis syndrome; cipa; congenital insensitivity to pain with anhidrosis; congenital insensitivity to pain-anhidrosis syndrome; congenital insensitivity to pain, anhidrosis and mental retardation
Patient organizations
- Hereditary Neuropathy Foundation Inc.Hereditary insensitivity to pain with anhidrosis · United States
- 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 Hereditary insensitivity to pain with anhidrosis.
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