Living with Extensor tendons of finger anomalies
A very rare inherited condition in which finger tendons attach abnormally, so fingers stay bent.
Understanding Extensor tendons of finger anomalies
It is present at birth in both hands, affecting the four fingers on the little-finger side. The tendons attach to the middle bones of the fingers, which keeps the middle joints bent and makes the fingers hard to straighten. GARD notes no further reports since 1980.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Fingers that stay bent (camptodactyly)
- Limited joint movement
- Muscle wasting
- Multiple fatty lumps
- Weak bones (osteoporosis)
- Yellow fatty deposits on the skin
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
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 genes cause this condition. It is autosomal dominant, which means a change in one copy of the gene can cause it. GARD does not name the gene.
Also known as: hapnes-boman-skeie syndrome; tendons, extensor, of fingers, anomalous insertion of
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 Extensor tendons of finger anomalies.
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