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Juvenile Dermatomyositis

What is juvenile dermatomyositis?

Juvenile dermatomyositis (JDM) is a rare disease that causes muscle inflammation and a skin rash. Symptoms often first appear in children between ages 5 and 10, but can occur at other ages. Children with JDM have weakness especially in the muscles around their neck, shoulders, and hips. They also have a skin rash around certain areas such as the eyelids, knuckles, finger joints, as well as elsewhere.

What causes juvenile dermatomyositis?

The exact cause is not yet known, but it is associated with abnormalities of the immune system.

What are the symptoms of juvenile dermatomyositis?

JDM symptoms often appear slowly over time. In some cases, they may happen more quickly or severely. Each child’s symptoms may vary. The most common symptoms include:

  • Fever

  • Rash around the eyelids, knuckles, or finger joints

  • Rash on the elbows, knees, and ankles

  • Muscle weakness

  • Lack of energy (fatigue)

  • Ill feeling (malaise)

  • Muscle pain and soreness

  • Irritable mood

  • Trouble swallowing

  • Weight loss, due to trouble swallowing

  • Joint pain and inflammation

  • Calcium deposits under the skin (calcinosis)

  • Mouth ulcers

  • Muscles wasting away (muscle atrophy)

These symptoms can seem like other health conditions. Make sure your child sees his or her healthcare provider for a diagnosis.

How is juvenile dermatomyositis diagnosed?

Your child's healthcare provider will take your child's medical history and do a physical exam. Your child may also have tests, such as:

  • Blood tests. These tests are used to assess the presence of antibodies, muscle enzymes, and signs of inflammation.

  • MRI. This test takes an image of the muscles to determine if there is inflammation.

  • Electromyelogram (EMG). This is an electrical test that may be done to find nerve or muscle damage.

  • Muscle and skin biopsy. Rarely, it might be necessary to obtain a tiny tissue sample of muscle or skin to help determine whether JDM is present.

How is juvenile dermatomyositis treated?

Your child's healthcare provider will figure out the best treatment plan for your child based on:
  • Your child's age and weight

  • Your child’s overall health and medical history

  • The severity of your child's JDM

  • How well your child handles certain medicines, treatments, or therapies

  • Your input about your child

There is no cure for JDM, but the symptoms can be managed, and the disease may go into remission. This means the symptoms will go away. Treatments may include:

  • Medicines. These are used to treat inflammation and skin symptoms.

  • Physical and occupational therapy. This can help to improve muscle function and strength.

  • Sunscreen. Using sunscreen helps to prevent more irritation or damage to the skin.

  • Nutrition. A healthy diet will help support the body during the disease.

Talk with your child’s healthcare provider about the risks, benefits, and possible side effects of all medicines.

What are the complications of juvenile dermatomyositis?

Many children will recover from JDM without any lasting problems. Some children may have mobility issues due to contractures of the joints. Other children may have ongoing (chronic) symptoms. These may include pain, muscle weakness, deposits of calcium in the skin or delayed growth. There may be damage to bones, joints, lungs, or other internal organs.

Helping your child live with juvenile dermatomyositis

Juvenile dermatomyositis can make it hard for a child to take part in school and other activities. Work with your child’s school to help teachers and caregivers understand your child’s limits. A healthy lifestyle can help improve your child’s quality of life. This includes a good diet, exercise, and rest. A support group may help your child feel less alone or different.

When should I call my child’s healthcare provider?

Tell the healthcare provider if your child's symptoms get worse or there are new symptoms.

Key points about juvenile dermatomyositis

  • Juvenile dermatomyositis (JDM) is a rare disease that causes muscle inflammation and a skin rash.

  • Symptoms often first appear in children between ages 5 and 10.

  • Symptoms include fever, rash, muscle weakness and pain, and calcium deposits under the skin.

  • The condition also causes a rash around the eyelids, knuckles, or finger joints. A rash may also occur on the elbows, knees, ankles, or elsewhere.

  • Some children may have a complete remission of the disease. Others may have chronic symptoms that continue.

Next steps

Tips to help you get the most from a visit to your child’s healthcare provider:

  • Know the reason for the visit and what you want to happen.

  • Before your visit, write down questions you want answered.

  • At the conclusion of the visit, you will receive a printed summary including the name of the new diagnosis, any new medicines, treatments, or tests, any new instructions your provider recommends, and the duration of time until your child's next appointment.

  • Know why a new medicine or treatment is prescribed and how it will help your child. Also know what the side effects are.

  • Ask if your child’s condition can be treated in other ways.

  • Know why a test or procedure is recommended and what the results could mean.

  • Know what to expect if your child does not take the medicine or have the test or procedure.

  • If your child has a follow-up appointment, write down the date, time, and purpose for that visit.

  • Know how you can contact your child’s provider after office hours. This is important if your child becomes ill and you have questions or need advice.

 

Medical Reviewers:

  • Adler, Liora C., MD
  • Brown, Kim, APRN
  • Siegel, David MD, MPH
  • Adler, Liora C., MD
  • Brown, Kim, APRN
  • Siegel, David MD, MPH