Processing a New Diagnosis
A diagnosis of an IIM can be a shock for your child, yourself, parents, siblings, extended family members and friends. Everyone will have different ways of getting through this time but it is important to know that help and support are available for you and your family. Hear advice on processing your diagnosis from a community member with shared experience.
Getting help processing a new diagnosis
There are many ways you can seek support as you process a new diagnosis:
- A psychologist is a university-qualified health professional who can help you talk about your thoughts and feelings to understand and cope with the challenges you and your family are facing. Visit our page on Psychology for more information.
- A counsellor is a trained professional who can help you talk about and work through problems. Visit our page on Counselling for more information.
- A social worker can provide information and support to people experiencing a range of issues including family problems, anxiety, depression, crisis and trauma. Visit our page on Social Work for more information.
- Your state or territory neuromuscular organisation can provide support, advice and information about living with IIMs. Visit our page on state and territory neuromuscular organisations for more information.
- Your GP can talk to you about a mental health plan and how you can use this to access the help and services you need. Visit our page on Wellbeing for more information.
- Other people and families living with IIMs have also experienced the emotional rollercoaster that comes with a diagnosis of an IIM and are able to understand exactly how you’re feeling. You are not alone. Connect with other people and families living with IIM in The Loop Community on our Forum.
Understanding IIM and How it’s Diagnosed
Idiopathic Inflammatory Myopathies (IIM) is the name given to a group of conditions caused by inflammation in the muscles or associated tissues. These conditions are non-hereditary, meaning they are not passed down from parents to children. Idiopathic Inflammatory Myopathies (IIM) include dermatomyositis and polymyositis.
What causes Idiopathic Inflammatory Myopathies?
The cause of most cases of IMM is unclear. In IMM the body’s immune system (your body’s defence system that keeps you from getting sick) turns against its own muscles and causes damage to muscle tissue.
In dermatomyositis, immune system cells attack the small blood vessels that supply blood to the muscles and the skin. In polymyositis, the immune system directly attacks muscle fibres.
What are the main types of IIM?
The two main types of IIM are:
- Dermatomyositis – this condition can occur in childhood or adulthood. In children, onset is usually between the ages of 5 and 14, and girls are affected more often than boys. The most common signs and symptoms of dermatomyositis include skin changes and muscle weakness.
- Polymyositis – this condition usually begins after age 20 and causes muscle weakness that tends to gradually worsen over time.
How is IIM diagnosed?
To diagnose idiopathic inflammatory myopathy, a doctor will consider your symptoms and medical history, and conduct a physical examination to look at the pattern of muscle weakness you are experiencing.
Some tests can be helpful to diagnose IIM or rule out other conditions that have similar symptoms:
- Blood tests: to check the level of creatine kinase (CK), an enzyme that leaks out of muscle fibres when the fibres are being damaged, or specific proteins produced by the immune system
- An electromyogram (EMG): a test in which tiny needles are inserted into the muscles to test their electrical activity of the muscle both at rest and when contracting
- Nerve conduction studies: Studies that measure the strength and speed of a nerve impulse
- Magnetic Resonance Imaging (MRI) scan - used to identify muscles for biopsy and show doctors the pattern of muscle involvement
- A muscle biopsy: involves removing a small piece of muscle for examination under a microscope.
Idiopathic Inflammatory Myopathies can cause pain and discomfort for a long period of time. However treatments are available to help manage these conditions and many people will partially or fully recover after a number of years of treatment. Some people can experience some permanent loss of strength and wasting of muscles. In other cases, there can be a full recovery of muscle strength and size. Complications can occur and you may need to be monitored for these (see symptoms). These conditions are generally not life threatening.
For more information about living with IIM, overcoming some of the day-to-day challenges and where to get the right support, visit: