Living with Congenital insensitivity to pain-hypohidrosis syndrome
A rare inherited nerve condition from birth in which a person cannot feel pain or extreme heat or cold, leading to unnoticed injuries.
Understanding Congenital insensitivity to pain-hypohidrosis syndrome
People cannot feel acute or inflammatory pain, or tell dangerous heat or cold, which can lead to many painless injuries. Corneal reflexes are missing, which can scar the cornea. Sweating and tearing are reduced, and skin infections recur. Light touch, vibration and body position sense are normal.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Not feeling pain
- Trouble feeling hot or cold
- Reduced sweating (hypohidrosis)
- Reduced tears
- Scarring of the cornea
- Repeated skin infections
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 PRDM12 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 PRDM12 gene are listed. It is autosomal recessive, so a child inherits a changed copy from each parent.
Also known as: cip-hypohidrosis syndrome; hereditary sensory and autonomic neuropathy type 8; hereditary sensory and autonomic neuropathy type viii; hsan viii; hsan8; hsan8 - hereditary sensory and autonomic neuropathy type 8
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 insensitivity to pain-hypohidrosis syndrome.
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