Myositis/Idiopathic Inflammatory Myopathy (Group of Conditions)

Myositis/Idiopathic Inflammatory Myopathy (Group of Conditions)

Rare Disease Classifications:

ORPHA:98482 Idiopathic inflammatory myopathy

ICD-11: 4A41 Idiopathic inflammatory myopathy

IMPORTANT INFORMATION

The information on the Rare Awareness Rare Education (RARE) Portal is intended for educational purposes only and does not replace professional advice.

Rare diseases typically display a high level of symptom complexity and variability. Individuals diagnosed with the same rare disease may be impacted differently and each person’s experience is unique. Please seek support from qualified healthcare professionals to learn more about the most suitable care and support options for you.

For more information on this disease, please refer to Myositis Association Australia1 and Genetic and Rare Diseases (GARD) Information Center – Idiopathic Inflammatory Myopathy.2 

A list of myositis can be found at RARE Portal: List of Myositis Conditions. Individual pages for the specific types of Myositis will be added to the RARE Portal in time.

If you are aware of any additional information that may benefit stakeholders with an interest in this page, please let us know via the Contribute page.

Contributors

Information for this page has been co-developed with RVA Partner, Myositis Association Australia.1

Quick Page Search:
Emergency Management | Clinical Care Guidelines | Synonyms | Summary | Personal Stories | Symptoms | Cause/Inheritance | Diagnosis | Treatment | Clinical Care | Research | Rare Disease Organisation(s) | Support Services/Resources | Mental Health | Other | References

Emergency Management

There may be special considerations for the emergency management of individuals living with Myositis presenting to emergency departments.

Clinical Care Guidelines

There may be specific clinical care guidelines for the individual myositis conditions.

Information for specific myositis conditions will be added to the RARE Portal in time.

Synonyms

Idiopathic Inflammatory Myopathy, Familial; Idiopathic Inflammatory Myositis

Summary

Idiopathic Inflammatory Myopathy, also known as Myositis, is a group of rare conditions characterised by chronic inflammation of skeletal muscle tissues involved in movement, resulting in muscle weakness, swelling, joint pain and fatigue.1,2 The term “myositis” is also used to refer to inflammation of muscle tissues that can commonly occur in all individuals; however, people living with this rare group of Myositis conditions often experience progressive muscle deterioration and loss.1 Whilst the cause of these conditions is generally unknown, they often have an autoimmune component, in which the body’s immune system produces antibodies attacking its own muscles.

Myositis can affect both adults and children depending on the specific condition. Different forms of Myositis include:1-3

Myositis is also a feature of various other conditions such as Antisynthetase Syndrome, Eosinophilic fasciitis and Necrotizing Myositis/Fasciitis.1,3 As a relatively less well-known group of diseases, Myositis has, at times, been misdiagnosed as other conditions that share similar symptoms, including Motor Neuron Disease (MND).1

The list of myositis types can be found at RARE Portal: List of Myositis Conditions. Individual pages for the specific types of Myositis will be added to the RARE Portal in time.

Useful Links for Professionals

Myositis Association Australia – Information for Health Professionals

Orphanet: Idiopathic Inflammatory Myopathy

Personal Stories

Myositis varies between individuals, and each person’s experience is unique.

Please visit Myositis Association Australia: Myo Journeys to read the personal stories of people living with Myositis.

The following personal stories shared with Rare Voices Australia: Lachy’s Story , Damian’s Story ,Tracy’s Story.

Symptoms

Please speak to your medical team to learn more about the symptoms and complications for a specific condition of Myositis.

Cause/Inheritance

The primary cause of most, if not all, Myositis conditions is unknown and is likely to involve several factors. Myositis conditions are generally thought to be autoimmune disorders and are not inherited.

Diagnosis

Diagnosis of Myositis will depend on the specific type of Myositis condition and may include some or all of the following:

  • a muscle biopsy
  • a skin biopsy (for those with symptoms relating to skin)
  • blood tests to check for elevated creatine kinase (CK) levels and/or auto-antibodies
  • electromyography (EMG) to assess nerve-to-muscle signal transmission; to identify it is a muscle-related disorder
  • muscle imaging with magnetic resonance imaging (MRI) or computed tomography (CT) scans to detect for disease-specific patterns

Differential diagnostic tests may also be performed to rule out other conditions that share similar symptoms.

Treatment

Treatment or management will depend on the type of Myositis condition as well as an individual’s specific symptoms and complications.

It is best to speak with your medical team to learn more about the possible treatments for a specific Myositis condition and its associated symptoms.

Clinical Care

Healthcare professionals involved in the treatment of Myositis may include general practitioners (GP), rheumatologists, dermatologists, neurologists, physiotherapists and occupational therapists.1,2 The need for different healthcare professionals may change over a person’s lifetime and extend beyond those listed here.

Myositis Association Australia provides its members with a list of medical and allied health professionals who have experience in advising people living with Myositis.

Research

For research updates, please visit the Myositis Association Australia: Current Research.

Please visit Australian Clinical Trials to learn about clinical trials for Myositis in Australia; there may not be any clinical trials currently available.

Information regarding clinical trials for Myositis in other countries can be found at ClinicalTrials.gov; there may not be any clinical trials currently available.

It is best to discuss your interest in any clinical trials with your medical team to determine suitability and eligibility.

Rare Disease Organisation(s)

Myositis Association Australia
Website: https://myositis.org.au/
Phone: 0421 314 138
Email: [email protected]
Contact form: https://myositis.org.au/contact/

The Myositis Association – Australia Inc is a registered charity, run by volunteers, who have Myositis.

They provide support and advocacy for individuals living with Myositis, their carers, family members and friends. Their goal is to help more people keep in touch, share their experiences and learn practical ways to manage their condition. They also work to raise awareness of Myositis and to support Australian-based research looking into ways to prevent and treat the disease as well as improving the quality of life for those living with Myositis.

Please note that RVA does not necessarily monitor or endorse each group/organisation’s operational governance

Support Services/Resources

For information on available government and social services that provide support for individuals with a rare disease, please visit the National and State Services pages.

Mental Health

Please visit the ‘Mental Health’ sections listed on the National and State Services pages.

Other

Information on the different types of Myositis can be found at:

References
  1. Myositis Association Australia. Accessed on 19 January 2023. https://myositis.org.au/
  2. Genetic and Rare Diseases (GARD) Information Center. Idiopathic inflammatory myopathy. Accessed 19 January 2023. https://rarediseases.info.nih.gov/diseases/9128/idiopathic-inflammatory-myopathy
  3. Idiopathic inflammatory myopathy. Accessed 19 January 2023. https://www.orpha.net/en/disease/detail/98482
Page Last Updated

17/07/2024 13:30