Living with Multicentric osteolysis, nodulosis, and arthropathy
A rare inherited condition with loss of bone in the hands and feet, joint problems, brittle bones, and firm lumps under the skin.
Understanding Multicentric osteolysis, nodulosis, and arthropathy
Bone loss usually begins in the hands and feet, causing pain and limiting movement. Later, joint problems can appear in the elbows, shoulders, knees, hips, and spine. Most people develop thin, brittle bones that fracture more easily, and short stature. Many have firm, noncancerous lumps under the skin, especially on the soles. Other features can include skin changes, cloudy corneas, extra hair growth, gum overgrowth, heart differences, and coarse facial features.
Signs & symptoms
GARD doesn't list a set of most common symptoms for this condition. Its summary describes these features:
- Loss of bone in the hands and feet (osteolysis)
- Joint problems (arthropathy)
- Thin, brittle bones
- Short stature
- Firm lumps under the skin (nodules)
- Cloudy corneas
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Little People of America may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: Little People of America
- 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 Little People of America
- 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
GARD describes this as an inherited disease. It notes that Torg syndrome may be part of MONA or a separate disorder caused by a different gene, and does not list a specific gene here.
Also known as: al-aqeel sewairi syndrome; mona; mona, mmp2-related; multicentric osteolysis, nodulosis and arthropathy, mmp2-related; osteolysis, hereditary multicentric; torg syndrome
Patient organizations
- Little People of AmericaMulticentric osteolysis, nodulosis, and arthropathy · United States
You are more than your diagnosis
Perspectives from people navigating life with Multicentric osteolysis, nodulosis, and arthropathy.
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