What is juvenile dermatomyositis?
Juvenile dermatomyositis (JDM) is a rare disease that causes muscle inflammation and
a skin rash. It's different from other muscle diseases because it also causes skin
problems. Symptoms often first appear in children between ages 5 and 10. Children
with JDM have weakness in the muscles around their neck, shoulders, and hips. They
also have a skin rash around certain areas such as the eyelids, knuckles, and finger
What causes juvenile dermatomyositis?
The exact cause is not yet known. But it may be linked to problems with the immune
system that result in infections.
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:
- 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)
- Some muscles may become paralyzed in a contracted position
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
- Electromyelogram (EMG). This is an electrical test that may be done to find nerve or muscle damage.
- MRI. This test uses large magnets and a computer to look for inflammation in the body.
- Muscle and skin biopsy. Tiny tissue samples are removed and checked under a microscope.
How is juvenile dermatomyositis treated?
Your child's healthcare provider will figure out the best treatment plan for your
child based on:
- How old your child is
- Your child’s overall health and medical history
- How sick your child is
- How well your child handles certain medicines, treatments, or therapies
- If your child’s condition is expected to get worse
- The opinion of the healthcare providers involved in your child's care
- Your opinion and preference
There is no cure for JDM, but the symptoms can be managed. 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, and delayed growth. There
may be damage to bones, joints, lungs, and 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 condition also causes a rash around the eyelids, knuckles, or finger joints. A
rash may also occur on the elbows, knees, and ankles.
- Some children may have a complete remission of the disease. Others may have chronic
symptoms that continue.
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 visit, write down the name of a new diagnosis, and any new medicines, treatments,
or tests. Also write down any new instructions your provider gives you for your child.
- 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.