Living with Multicentric osteolysis nodulosis arthropathy spectrum
A rare condition with bone loss in the wrists and ankles, joint damage, firm skin lumps, and facial differences.
Understanding Multicentric osteolysis nodulosis arthropathy spectrum
It is marked by loss of bone in the outer limbs, especially wrist and ankle bones, along with erosion of finger joints, firm lumps under the skin, and facial differences. A wide range of other features can occur. Signs start in infancy or childhood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Bone loss in the wrists and ankles (osteolysis)
- Joint disease and arthritis
- Firm lumps under the skin
- Thin, brittle bones (osteopenia, osteoporosis)
- Facial differences
- Extra body hair
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 (also called variants) cause this condition, and it is inherited in an autosomal recessive way. This means a child inherits a changed copy of the gene from each parent.
Also known as: mona (multicentric osteolysis nodulosis arthropathy) spectrum; mona spectrum; multicentric osteolysis-nodulosis-arthropathy spectrum; nao syndrome; nodulosis-arthropathy-osteolysis syndrome; torg-winchester syndrome
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 Multicentric osteolysis nodulosis arthropathy spectrum.
Explore research for Multicentric osteolysis nodulosis arthropathy spectrum
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