Living with Amyopathic dermatomyositis
A form of dermatomyositis with the typical skin changes but no muscle weakness.
Understanding Amyopathic dermatomyositis
Skin changes can include a pink rash on the face, neck, forearms, and upper chest, as well as Gottron's papules and heliotrope eyelids. Itching and sun sensitivity are common. People should not have obvious muscle weakness, though minor muscle changes may occur. Some cases have been tied to internal cancers or interstitial lung disease.
Signs & symptoms
Symptoms vary from person to person. GARD's summary says they may include:
- Pink rash on the face, neck, forearms, and upper chest
- Gottron's papules (bumps over the knuckles)
- Purple-red eyelids (heliotrope)
- Itching
- Sun sensitivity
- Tiredness (fatigue)
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, brain and nervous system specialists, kidney specialists and skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
The Myositis Association may keep lists of experts for this condition.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Brain and nervous system specialists (neurologists); Kidney specialists (nephrologists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: The Myositis 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 The Myositis Association 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 doesn't describe a specific cause. It notes some cases have been linked to internal cancer or interstitial lung disease.
Also known as: dermatomyositis sine myositis
Patient organizations
- The Myositis AssociationAmyopathic dermatomyositis · United States
- National Kidney FoundationKidney diseases · United States
- Renal Support NetworkKidney diseases · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Amyopathic dermatomyositis.
Explore research for Amyopathic dermatomyositis
Explore actively recruiting Amyopathic dermatomyositis studies with HealthSpark.
Find actively recruiting studies for Amyopathic dermatomyositis 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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