Skip to content
knowrare
HealthSignal
Your condition community

Living with Childhood type dermatomyositis

A condition of children that causes muscle inflammation and weakness along with skin changes, and can affect swallowing, breathing, and the heart.

Get Signals Ask Anything

Understanding Childhood type dermatomyositis

Childhood type dermatomyositis, also called juvenile dermatomyositis, is a condition with muscle inflammation and skin changes in children.

It has some similarities to adult dermatomyositis and polymyositis. Children may have trouble swallowing and breathing, and the heart may be affected. About 20 to 30 percent develop calcium deposits in soft tissue. A common muscle enzyme blood test (creatine kinase) may be normal, but other muscle enzymes can be higher than normal.

Signs & symptoms

Symptoms vary from child to child. GARD lists these among the most common:

  • Muscle weakness
  • Muscle inflammation (myositis)
  • Muscle and joint pain
  • Calcium buildup in soft tissues (calcinosis)
  • Fever and tiredness (fatigue)
  • Itching and dry skin

Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.

Diagnosis

  1. Talk with your doctor

    Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.

  2. See a specialist

    Specialists who may be involved include autoimmune and inflammatory disease specialists, brain and nervous system specialists, kidney specialists and lung and breathing specialists.

  3. Ask which tests can help

    Your care team will decide which exams and tests can confirm the diagnosis.

  4. Connect with expert centers

    Autoimmune Association, Cure JM Foundation and Myositis Support and Understanding 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); Lung and breathing specialists (pulmonologists)
Expert care
Expert lists: Autoimmune Association, Cure JM Foundation, Myositis Support and Understanding
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 Autoimmune 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
Bring these questions to your next doctor visit
Which blood tests and muscle tests will we use to track my child's condition?
Should my child's swallowing, breathing, and heart be checked?
Which specialists should be on my child's care team?

Quick facts

Symptoms usually starta variety of ages

GARD doesn't describe a cause for this condition yet.

RespiratoryNeurologicalKidneySkin

Also known as: childhood dermatomyositis; inflammation of myoseptum; juvenile dermatomyositis; juvenile dm; myoseptum inflammation; myoseptumitis

Patient organizations

Source: NIH GARD · Childhood type dermatomyositisGARD ID 6805 · GARD page updated September 2026 · Plain-language summary by Know Rare; editorial review pending. General information, not medical advice.

You are more than your diagnosis

Perspectives from people navigating life with Childhood type dermatomyositis.

Explore the Childhood type dermatomyositis blog
Broader resource

9 Things to Know After Diagnosis

Read article
Broader resource

The Invisible Job: What Caregiving for a Rare Disease Really Looks Like

Read article
Broader resource

Embrace the Ask: How to Seek The Support You Need

Read article
Your experience could help someone else.

Share your story with our editorial team.

Share your story You choose what to share.

Explore research for Childhood type dermatomyositis

Explore actively recruiting Childhood type dermatomyositis studies with HealthSpark.

HealthSpark

Find actively recruiting studies for Childhood type 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

Powered by HealthSpark, our AI chat helper

I can help you find recruiting Childhood type dermatomyositis studies. Enter a ZIP code, address or city below and I'll look within 50 miles.

Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.

Get Signals for Childhood type dermatomyositis

Stay in the loop with community stories and updates from medical researchers.

HealthStoryfor Childhood type dermatomyositis

Create a living journal that talks back

HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Childhood type dermatomyositis experiences more deeply and prepare for better conversations with your doctors and care team.

Start your journal

Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.