Palmoplantar keratoderma-hereditary motor and sensory neuropathy syndrome

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ORPHA:538574OMIM:148360G60.0
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Overview

Palmoplantar keratoderma-hereditary motor and sensory neuropathy syndrome (also known as PPK-HMSN syndrome, or sometimes called Charcot-Marie-Tooth disease with palmoplantar keratoderma) is a rare inherited condition that affects both the skin and the nervous system at the same time. The name describes the two main problems: 'palmoplantar keratoderma' means the skin on the palms of the hands and the soles of the feet becomes very thick and tough, and 'hereditary motor and sensory neuropathy' means the nerves that control movement and feeling in the arms and legs are damaged over time. People with this condition often notice thickened, sometimes painful skin on their hands and feet from early in life, along with weakness in the lower legs and feet, balance problems, and reduced ability to feel sensations like touch, heat, or pain in the hands and feet. The nerve damage tends to get slowly worse over time, which can make walking and daily tasks more difficult. There is currently no cure for this syndrome. Treatment focuses on managing symptoms — for example, using skin-softening creams and physical therapy to maintain strength and mobility. A team of specialists including neurologists and dermatologists usually work together to help patients live as comfortably as possible. Early diagnosis and regular monitoring are important to slow the impact on daily life.

Also known as:

Key symptoms:

Very thick, tough skin on the palms of the hands and soles of the feetMuscle weakness in the lower legs and feetDifficulty walking or frequent tripping and fallingReduced ability to feel touch, pain, or temperature in the hands and feetFoot deformities such as high arches or hammer toesLoss of muscle bulk in the lower legs, giving a 'stork leg' appearanceNumbness or tingling in the hands and feetBalance problemsPainful or cracked skin on the feet and handsSlow nerve conduction detected on nerve tests

Inheritance

Variable

Can be inherited in different ways depending on the underlying gene

Age of Onset

Variable

Can begin at different ages, from infancy through adulthood

Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Palmoplantar keratoderma-hereditary motor and sensory neuropathy syndrome.

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No actively recruiting trials found for Palmoplantar keratoderma-hereditary motor and sensory neuropathy syndrome at this time.

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No specialists are currently listed for Palmoplantar keratoderma-hereditary motor and sensory neuropathy syndrome.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Palmoplantar keratoderma-hereditary motor and sensory neuropathy syndrome.

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Community

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Caregiver Resources

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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.Which specific gene is causing my condition, and what does that mean for my family members?,How quickly is the nerve damage likely to progress, and what signs should I watch for?,What type of physiotherapy or exercise program is best for me right now?,Are there any clinical trials or new treatments I should know about?,What skin care routine do you recommend, and are there prescription creams that would help?,Should my children or siblings be tested for this condition?,What mobility aids or orthotics might help me, and how do I access them?

Common questions about Palmoplantar keratoderma-hereditary motor and sensory neuropathy syndrome

What is Palmoplantar keratoderma-hereditary motor and sensory neuropathy syndrome?

Palmoplantar keratoderma-hereditary motor and sensory neuropathy syndrome (also known as PPK-HMSN syndrome, or sometimes called Charcot-Marie-Tooth disease with palmoplantar keratoderma) is a rare inherited condition that affects both the skin and the nervous system at the same time. The name describes the two main problems: 'palmoplantar keratoderma' means the skin on the palms of the hands and the soles of the feet becomes very thick and tough, and 'hereditary motor and sensory neuropathy' means the nerves that control movement and feeling in the arms and legs are damaged over time. People