Living with Familial osteoarthropathy of the fingers
A very rare genetic bone condition with painless swelling in finger joints, starting before age 25 and often mild.
Understanding Familial osteoarthropathy of the fingers
It causes painless swelling of the middle finger joints, followed by osteoarthritis-like changes. It begins before age 25, often in the teen years. GARD notes it often has a benign (mild) course.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Painless swelling of finger joints
- Death of bone from low blood supply (avascular necrosis)
- Abnormal shape at the ends of bones
- Limited joint movement
- Short fingers or toes (brachydactyly)
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 autoimmune and inflammatory disease specialists, 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
- autoimmune and inflammatory disease specialists (rheumatologists); 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 it. It is autosomal dominant, which means one changed copy of a gene is enough. GARD doesn't name the gene.
Also known as: aseptic necrosis of phalangeal epiphyses; familial osteoarthropathy of fingers; osteochondritis of phalangeal epiphyses; osteochondrosis of phalangeal epiphyses; thiemann disease; thiemann disease familial form
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 Familial osteoarthropathy of the fingers.
Explore research for Familial osteoarthropathy of the fingers
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