Living with Tarsal-carpal coalition syndrome
An inherited bone condition in which wrist, ankle, and finger and toe bones fuse, causing stiffness.
Understanding Tarsal-carpal coalition syndrome
The wrist bones fuse together, as do the ankle bones, which makes hands and feet stiff. Finger and toe joints can also fuse, usually starting with the little fingers and toes. Making a fist becomes harder, and walking can become painful. Signs may begin in infancy and get worse with age. Less common features are short stature and hearing loss.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Fused ankle bones
- Fused wrist bones
- Stiff fingers and toes
- Trouble making a fist
- Painful walking
- Short stature
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 bone and joint specialists and genetic specialists.
- 3Consider genetic testing
Changes in NOG are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Genetic specialists (geneticists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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
Changes in the NOG gene cause this condition. It is autosomal dominant, meaning one changed copy of the gene can cause it.
Also known as: nog gene-related symphalangism spectrum disorder
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Tarsal-carpal coalition syndrome.
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