Living with Inclusion body myopathy with Paget disease of bone and frontotemporal dementia
An inherited condition that can affect the muscles, bones, and brain, usually starting in adulthood.
Understanding Inclusion body myopathy with Paget disease of bone and frontotemporal dementia
The first symptom is often muscle weakness in mid-adulthood. It starts in the hips and shoulders, then other muscles. About half of adults also develop Paget disease of bone, and about one-third have brain effects (frontotemporal dementia) in their forties or fifties.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Weak hip and shoulder muscles
- Trouble climbing stairs or raising the arms
- Bone pain, often in the hips and spine
- Weak, enlarged bones (Paget disease of bone)
- Memory, speech, and word-finding trouble (frontotemporal dementia)
- Personality changes and poor judgment
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 brain and nervous system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Cure VCP Disease, Inc. and Muscular Dystrophy Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Cure VCP Disease, Inc., Muscular Dystrophy Association
- 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 Cure VCP Disease, Inc. and other patient organizations
- 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 lists autosomal dominant inheritance, meaning one changed copy of the gene can be enough. It doesn't name a gene.
Also known as: ibmpfd; ibmpfd - inclusion body myopathy with early onset paget disease and frontotemporal dementia; inclusion body myopathy with early-onset paget disease and frontotemporal dementia; inclusion body myopathy with early-onset paget disease with or without frontotemporal dementia; inclusion body myopathy with paget disease of bone and/or frontotemporal dementia; inclusion body myopathy with paget's disease of bone and frontotemporal dementia
Patient organizations
- Cure VCP Disease, Inc.Inclusion body myopathy with Paget disease of bone and frontotemporal dementia · United States
- Muscular Dystrophy AssociationInclusion body myopathy with Paget disease of bone and frontotemporal dementia · United States
You are more than your diagnosis
Perspectives from people navigating life with Inclusion body myopathy with Paget disease of bone and frontotemporal dementia.
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