Living with Idiopathic inflammatory myopathy
A group of conditions with inflamed muscles that cause slowly growing muscle weakness.
Understanding Idiopathic inflammatory myopathy
It usually appears in adults between ages 40 and 60 or in children between ages 5 and 15, but it can occur at any age. Forms include polymyositis, dermatomyositis, and sporadic inclusion body myositis. Muscle weakness develops over weeks, months, or even years.
Signs & symptoms
Symptoms vary from person to person. GARD describes these as the main ones:
- Muscle weakness that grows slowly
- Trouble climbing stairs or getting up from a seat
- Trouble lifting things above the head
- Joint pain
- Tiredness (fatigue)
- Red or purple rash on eyelids, elbows, knees, or knuckles
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.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- 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
GARD doesn't describe a cause for this condition yet.
Also known as: idiopathic inflammatory myositis; idiopathic myositis
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 Idiopathic inflammatory myopathy.
Explore research for Idiopathic inflammatory myopathy
Explore actively recruiting Idiopathic inflammatory myopathy studies with HealthSpark.
Find actively recruiting studies for Idiopathic inflammatory myopathy with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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