Overview
Hypotrichosis-osteolysis-periodontitis-palmoplantar keratoderma syndrome (sometimes called HOPP syndrome) is an extremely rare genetic condition that affects several parts of the body at the same time. The name describes its four main features: hypotrichosis (thin or sparse hair), osteolysis (gradual breakdown or dissolving of bone), periodontitis (severe gum disease that can lead to early tooth loss), and palmoplantar keratoderma (thickened, hardened skin on the palms of the hands and soles of the feet). People with this syndrome typically notice hair that is unusually thin or sparse from early in life. The skin on their hands and feet becomes thick and rough, which can be uncomfortable or painful. Severe gum inflammation develops, often leading to loosening and premature loss of teeth. Perhaps most concerning is the progressive bone loss, which can affect the fingers, toes, and other bones, potentially leading to deformity and reduced function over time. Because this condition is so rare, there is no specific cure. Treatment focuses on managing each symptom individually. Dermatologists can help with skin thickening using moisturizers and keratolytic agents. Dentists and periodontists play a critical role in managing gum disease and preserving teeth as long as possible. Orthopedic specialists may be needed to address bone-related complications. Genetic counseling is recommended for affected families to understand the inheritance pattern and risks for future children.
Also known as:
Key symptoms:
Thin or sparse hair on the scalp and bodyThickened, rough skin on the palms of the handsThickened, rough skin on the soles of the feetSevere gum disease (periodontitis)Early loss of teethProgressive bone loss, especially in fingers and toesShortening or deformity of fingers or toesNail abnormalitiesRecurrent skin infections on hands or feetPain or discomfort when walking due to thick skin on feetFragile or brittle bones
Autosomal recessive
Passed on when both parents carry the same gene change; often skips generations
Childhood
Begins in childhood, roughly ages 1 to 12
Treatments
No FDA-approved treatments are currently listed for Hypotrichosis-osteolysis-periodontitis-palmoplantar keratoderma syndrome.
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Specialists
View all specialists →No specialists are currently listed for Hypotrichosis-osteolysis-periodontitis-palmoplantar keratoderma syndrome.
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 Hypotrichosis-osteolysis-periodontitis-palmoplantar keratoderma syndrome.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
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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 is the expected progression of bone loss in my case, and how will you monitor it?,What treatments can help slow down or manage the bone breakdown?,How often should I see a dentist or periodontist, and what dental treatments do you recommend?,Are there specific skin care routines or prescription creams that work best for the thickened skin?,Should my family members be tested for this condition?,Are there any clinical trials or new treatments being studied for this syndrome?,What support services are available for managing the emotional and psychological impact of this condition?
Common questions about Hypotrichosis-osteolysis-periodontitis-palmoplantar keratoderma syndrome
What is Hypotrichosis-osteolysis-periodontitis-palmoplantar keratoderma syndrome?
Hypotrichosis-osteolysis-periodontitis-palmoplantar keratoderma syndrome (sometimes called HOPP syndrome) is an extremely rare genetic condition that affects several parts of the body at the same time. The name describes its four main features: hypotrichosis (thin or sparse hair), osteolysis (gradual breakdown or dissolving of bone), periodontitis (severe gum disease that can lead to early tooth loss), and palmoplantar keratoderma (thickened, hardened skin on the palms of the hands and soles of the feet). People with this syndrome typically notice hair that is unusually thin or sparse from ea
How is Hypotrichosis-osteolysis-periodontitis-palmoplantar keratoderma syndrome inherited?
Hypotrichosis-osteolysis-periodontitis-palmoplantar keratoderma syndrome follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Hypotrichosis-osteolysis-periodontitis-palmoplantar keratoderma syndrome typically begin?
Typical onset of Hypotrichosis-osteolysis-periodontitis-palmoplantar keratoderma syndrome is childhood. Age of onset can vary across affected individuals.