Overview
Hereditary sensory and autonomic neuropathy type 5 (HSAN5) is a very rare inherited condition that affects the nerves responsible for sensing pain, temperature, and touch, as well as the nerves that control automatic body functions like sweating and heart rate. These are called sensory and autonomic nerves. In HSAN5, these nerves do not work properly, which means the body cannot feel pain or temperature changes the way it normally should. This is sometimes called congenital insensitivity to pain, because people with this condition are often born unable to feel pain at all. Because pain is the body's warning system, not being able to feel it is actually very dangerous. People with HSAN5 can injure themselves without knowing it — breaking bones, burning skin, or damaging joints — because they receive no pain signal telling them something is wrong. Over time, repeated unnoticed injuries can cause serious damage to bones and joints. Sweating may also be reduced or absent, making it hard for the body to regulate temperature. There is currently no cure for HSAN5. Treatment focuses on preventing injuries, monitoring for hidden damage, and managing complications as they arise. With careful daily management and regular medical check-ups, many people with HSAN5 can live meaningful lives, though the condition requires lifelong attention and care.
Also known as:
Key symptoms:
Complete or near-complete inability to feel pain from birthInability to sense hot and cold temperatures properlyRepeated bone fractures that may go unnoticedJoint damage from repeated undetected injuries (Charcot joints)Reduced or absent sweatingSkin wounds, ulcers, or infections that are not noticed because they cause no painMild reduction in touch sensationSelf-injuring behaviors in young children due to lack of pain awarenessDelayed diagnosis of internal injuries or infectionsPossible mild intellectual development differences in some cases
Clinical phenotype terms (11)— hover any for plain English
Autosomal recessive
Passed on when both parents carry the same gene change; often skips generations
Neonatal
Begins at or shortly after birth (first 4 weeks)
FDA & Trial Timeline
6 eventsBeijing Continent Pharmaceutical Co, Ltd. — PHASE2, PHASE3
Abbott Medical Devices
Lidoderm Patch: FDA approved
For relief of allodynia (painful hypersensitivity), and chronic pain in postherpetic neuralgia.
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
1 availableLidoderm Patch
Clinical Trials
View all trials with filters →No actively recruiting trials found for Hereditary sensory and autonomic neuropathy type 5 at this time.
New trials open frequently. Follow this disease to get notified.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Hereditary sensory and autonomic neuropathy type 5.
Community
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Start the conversation →Latest news about Hereditary sensory and autonomic neuropathy type 5
Disease timeline:
New recruiting trial: Secondary Sclerosis Cholangitis Prospective
A new clinical trial is recruiting patients for Hereditary sensory and autonomic neuropathy type 5
New recruiting trial: LUMENS-1 EU EFS CIP
A new clinical trial is recruiting patients for Hereditary sensory and autonomic neuropathy type 5
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What daily checks should we do at home to catch injuries early?,How often should we see an orthopedic specialist to check for bone and joint damage?,Are there any clinical trials or research studies we could join?,What should we do if we suspect a fracture or serious infection?,How do we manage overheating safely, especially in summer or during exercise?,Should other family members be tested for the NGF gene change?,Are there any patient registries or support networks for HSAN5 families?
Common questions about Hereditary sensory and autonomic neuropathy type 5
What is Hereditary sensory and autonomic neuropathy type 5?
Hereditary sensory and autonomic neuropathy type 5 (HSAN5) is a very rare inherited condition that affects the nerves responsible for sensing pain, temperature, and touch, as well as the nerves that control automatic body functions like sweating and heart rate. These are called sensory and autonomic nerves. In HSAN5, these nerves do not work properly, which means the body cannot feel pain or temperature changes the way it normally should. This is sometimes called congenital insensitivity to pain, because people with this condition are often born unable to feel pain at all. Because pain is the
How is Hereditary sensory and autonomic neuropathy type 5 inherited?
Hereditary sensory and autonomic neuropathy type 5 follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Hereditary sensory and autonomic neuropathy type 5 typically begin?
Typical onset of Hereditary sensory and autonomic neuropathy type 5 is neonatal. Age of onset can vary across affected individuals.
Which specialists treat Hereditary sensory and autonomic neuropathy type 5?
1 specialists and care centers treating Hereditary sensory and autonomic neuropathy type 5 are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Hereditary sensory and autonomic neuropathy type 5?
1 patient support program are currently tracked on UniteRare for Hereditary sensory and autonomic neuropathy type 5. See the treatments and support programs sections for copay assistance, eligibility, and contact details.