Living with Hereditary sensory and autonomic neuropathy
A group of rare inherited nerve conditions that reduce the ability to feel pain and affect automatic body functions.
Understanding Hereditary sensory and autonomic neuropathy
Main features include a reduced ability to feel pain, which can mean slow healing, joint damage (Charcot joints), infections, bone infections, and sometimes amputations. HSAN is grouped into types 1 through 5, though some children do not fit neatly. Not everyone has changed pain sensation or automatic nervous system function.
Signs & symptoms
GARD doesn't list a symptom list for this condition, but the summary describes these signs:
- Reduced ability to feel pain
- Slow healing
- Joint damage (Charcot joints)
- Infections and bone 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.
- 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); 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 (also called variants) cause HSAN, and the gene depends on the type. Type 1 involves SPTLC1, type 2 involves WNK1, type 3 involves IKBKAP, type 4 involves NTRK1, and type 5 involves NGFB.
Also known as: cip; congenital insensitivity to pain; congenital pain insensitivity; hereditary sensory neuropathy; hereditary sensory peripheral neuropathy; hsan
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 Hereditary sensory and autonomic neuropathy.
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