Adults with dermatomyositis may experience weight loss or a low-grade fever, have inflamed lungs, and be sensitive to light. Children and adults with dermatomyositis may develop calcium deposits, which appear as hard bumps under the skin or in the muscle (called calcinosis). Calcinosis most often occurs 1-3 years after the disease begins. These deposits are seen more often in children with dermatomyositis than in adults. In some cases of dermatomyositis, distal muscles (muscles located away from the trunk of the body, such as those in the forearms and around the ankles and wrists) may be affected as the disease progresses. Dermatomyositis may be associated with collagen-vascular or
This table lists symptoms that people with this disease may have. For most diseases, symptoms will vary from person to person. People with the same disease may not have all the symptoms listed. This information comes from a database called the Human Phenotype Ontology (HPO) . The HPO collects information on symptoms that have been described in medical resources. The HPO is updated regularly. Use the HPO ID to access more in-depth information about a symptom.
|Medical Terms||Other Names||
|80%-99% of people have these symptoms|
|Abnormality of the eyelid||
Abnormality of the eyelids
Autoimmune disorder[ more ]
Puffiness around the eyes
Swelling around the eyes[ more ]
|Proximal muscle weakness||0003701|
|30%-79% of people have these symptoms|
|Abnormal hair quantity||0011362|
|Abnormality of the nail||0001597|
|Diffuse reticular or finely nodular infiltrations||0002207|
Tiredness[ more ]
|Interstitial pulmonary abnormality||0006530|
Skin itching[ more ]
|Recurrent respiratory infections||
Frequent respiratory infections
Multiple respiratory infections
respiratory infections, recurrent
Susceptibility to respiratory infections[ more ]
|5%-29% of people have these symptoms|
|Abnormality of eosinophils||0001879|
|Aplasia/Hypoplasia of the skin||
Absent/underdeveloped skin[ more ]
Bacterial infection of skin
Photosensitive skin rashes
Sensitivity to sunlight
Sun sensitivity[ more ]
Inability to produce voice sounds
|Feeding difficulties in infancy||0008872|
|Telangiectasia of the skin||0100585|
Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.
Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
Living with a genetic or rare disease can impact the daily lives of patients and families. These resources can help families navigate various aspects of living with a rare disease.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
New NCATS Rare Diseases Research Video
December 27, 2017
Rare Disease Day at NIH on March 1, 2018
December 19, 2017
International Consensus Conference to Develop Improvement Criteria for Juvenile Dermatomyositis and Adult Dermatomyositis and Polymyositis: Workshop to Define Minimal Clinical Improvement and Major Clinical Response
Monday, June 9, 2014 -
Tuesday, June 10, 2014
Location: Hotel Novotel La Defense, Paris, France
Description: Anticipated goals and use of results: We anticipate developing composite endpoints for future clinical trials that will be fully validated, endorsed by the ACR and EULAR, and used by all forthcoming myositis clinical trials and clinical studies as clinical endpoints. A likely secondary outcome of this work would be the stimulus to develop new therapies for myositis and conduct clinical trials of new therapeutic agents in myositis patients, given adequate ways to assess efficacy of new therapies in trials.
Contact: Dr. Sheila Newton(919) 541-4343
Co-funding Institute(s): National Institute of Environmental Health Sciences, Office of Rare Diseases Research
Workshop on Inflammatory Myopathy Wednesday, April 5, 2000 -
Thursday, April 6, 2000
Location: NIH Campus, Bethesda, MD
Description: The goal of this workshop was to provide a forum for researchers in the areas of myositis, muscle biology, and immunology to review the current status of research on inflammatory myopathies and explore potential new avenues of research.
Contact: Dr. Paul Plotz(301) 496-1474
Co-funding Institute(s): National Institute of Arthritis and Musculoskeletal and Skin Diseases
Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question
My father was diagnosed with dermatomyositis and has some long-lasting symptoms. Is it possible that radiation exposure could be contributing to his condition? See answer
My mother has been diagnosed with dermatomyositis. She has not responded to the treatments she has received. Can you provide information about the symptoms, treatment, and prognosis for this condition? See answer