Living with Hereditary sensory and autonomic neuropathy type 1
An inherited nerve condition affecting the feet and legs, with tingling, weakness, and reduced feeling of pain and temperature.
Understanding Hereditary sensory and autonomic neuropathy type 1
Many people have tingling, weakness, and a reduced ability to feel pain and sense hot and cold. Some feel shooting pains instead. As it progresses, the hands, arms, shoulders, and belly can be affected. Rarely, hearing loss occurs. It can start at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Reduced feeling in the feet and hands
- Reduced sense of pain and temperature
- Weakness in the feet (foot drop)
- Pain in the arms and legs
- Skin sores on the feet
- Little or too much sweating
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
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 any of several genes, such as SPTLC1, SPTLC2, ATL1, or DNMT1, depending on the form. All forms are autosomal dominant, so one changed copy of the gene is enough.
Also known as: acrodystrophic neuropathy; autosomal dominant sensory neuropathy; dominant hereditary sensory neuropathy, type i; hereditary sensory and autonomic neuropathy type i; hereditary sensory and autonomic neuropathy, type i; hereditary sensory neuropathy type i
Patient organizations
- Hereditary Neuropathy Foundation Inc.Hereditary sensory and autonomic neuropathy type 1 · United States
- Deater Foundation, Inc.Hereditary sensory and autonomic neuropathy type 1 · 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 sensory and autonomic neuropathy type 1.
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