Living with Hereditary liability to pressure palsies
An inherited nerve condition in which nerves are extra sensitive to pressure, causing numbness and weakness.
Understanding Hereditary liability to pressure palsies
Pressure from things like carrying heavy bags, leaning on an elbow, or sitting with crossed legs can cause episodes of numbness, tingling, and loss of muscle function in the area. Episodes can last minutes to months, and recovery is usually complete. Repeated episodes can leave lasting weakness or numbness. Many people also have carpal tunnel syndrome. It can start at a variety of ages.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Numbness and tingling
- Muscle weakness
- Nerve damage that affects feeling and movement
- Decreased or absent ankle reflexes
- Pain in the limbs, especially the hands
- Curved spine (scoliosis)
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 PMP22 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 PMP22 gene. It is autosomal dominant, so one changed copy of the gene is enough.
Also known as: current pressure-sensitive neuropathy; familial recurrent polyneuropathy; hereditary neuropathy with liability to pressure palsies; heterozygous microdeletion 17p11.2p12; hnpp; neuropathy, recurrent, with pressure palsies
Patient organizations
- Hereditary Neuropathy Foundation Inc.Hereditary liability to pressure palsies · United States
- CMT Research FoundationHereditary liability to pressure palsies · United States
- Chromosome Disorder OutreachChromosome disorders · 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 liability to pressure palsies.
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