Overview
Talo-patello-scaphoid osteolysis (also sometimes called TPS osteolysis) is a very rare bone disease where certain bones in the feet and knees slowly break down and disappear over time. The name refers to the three bones most affected: the talus (a bone in the ankle), the patella (the kneecap), and the scaphoid (a small bone in the foot, also called the navicular bone). The word 'osteolysis' means bone loss or bone dissolving. This condition usually begins in childhood and causes progressive pain, swelling, and stiffness in the affected joints. As the bones break down, the joints lose their normal shape and function, making walking and everyday movement increasingly difficult. The hips and other joints may also be involved in some cases. The exact cause is not fully understood, but it is believed to have a genetic basis in many families. There is currently no cure for talo-patello-scaphoid osteolysis. Treatment focuses on managing pain, protecting the joints, and maintaining as much mobility as possible. This may include pain medications, physical therapy, orthotics (special shoe inserts or braces), and in some cases surgery. Because this disease is so rare, most treatment plans are based on individual needs rather than large clinical trials.
Also known as:
Key symptoms:
Pain in the ankles, knees, or feetSwelling around the affected jointsStiffness in the ankles and kneesDifficulty walking or limpingProgressive loss of bone in the ankle, kneecap, or footFlat feet or changes in foot shapeReduced range of motion in affected jointsJoint instability or feeling of loosenessMuscle weakness around affected joints
Clinical phenotype terms (6)
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Childhood
Begins in childhood, roughly ages 1 to 12
Treatments
No FDA-approved treatments are currently listed for Talo-patello-scaphoid osteolysis.
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Specialists
View all specialists →No specialists are currently listed for Talo-patello-scaphoid osteolysis.
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 Talo-patello-scaphoid osteolysis.
Community
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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.How quickly is the bone loss likely to progress in my case?,Should I have genetic testing, and could this condition be passed on to my children?,What type of imaging should I have regularly to monitor the bone changes?,Are there any clinical trials or research studies I could participate in?,What physical activities are safe, and which ones should I avoid?,When would surgery be considered, and what type would be recommended?,Are there any specialists or centers with specific experience in this condition that you would recommend?
Common questions about Talo-patello-scaphoid osteolysis
What is Talo-patello-scaphoid osteolysis?
Talo-patello-scaphoid osteolysis (also sometimes called TPS osteolysis) is a very rare bone disease where certain bones in the feet and knees slowly break down and disappear over time. The name refers to the three bones most affected: the talus (a bone in the ankle), the patella (the kneecap), and the scaphoid (a small bone in the foot, also called the navicular bone). The word 'osteolysis' means bone loss or bone dissolving. This condition usually begins in childhood and causes progressive pain, swelling, and stiffness in the affected joints. As the bones break down, the joints lose their no
How is Talo-patello-scaphoid osteolysis inherited?
Talo-patello-scaphoid osteolysis follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Talo-patello-scaphoid osteolysis typically begin?
Typical onset of Talo-patello-scaphoid osteolysis is childhood. Age of onset can vary across affected individuals.