Christine’s Journey – Interstitial Myositis

Christine’s Journey – Interstitial Myositis

I’ve lived with Myositis for approximately 17 years. After taking 6 years to achieve a diagnosis, I understand the need for increased awareness and education for Myositis. My first symptoms were subtle. Perplexing reduced endurance for walking, difficulty rolling over in bed, getting out of chairs and fatigue over several years, eventually led to an…

Patient S’s Journey – Antisynthetase Syndrome, Interstitial Lung Disease, Polymyositis, Dermatomyositis

Patient S’s Journey – Antisynthetase Syndrome, Interstitial Lung Disease, Polymyositis, Dermatomyositis

Patient S – My journey started July 2013 when I was 37 years old. I already had Fibromyalgia. I was diagnosed with that in 1997 and managed that without medication. I worked full time with doing an office job which I travelled to by train. Then walked two city blocks. I began to notice that…

Useful Information
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Useful Information

This is to be a list of websites which you, our members have found useful such as: Myositis information available on the website of Australian or overseas organisations, drug research, disability services and equipment. Write to us at mail@myositis.org.au if you have sites to share. www.daru.org.au/resources/dsp-help-an-online-resource = Useful program to help applicants obtain a Centrelink Disability Support Pension www.myagedcare.gov.au=…

Fact Sheets
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Fact Sheets

PDF Fact Sheets available for download below: Inclusion Body Myositis (IBM) Polymyositis (PM) Dermatomyositis (DM) Overlap Myositis (OM) Antisynthetase Syndrome Immune-Mediated Necrotizing Myositis (IMNM) Necrotizing Myositis/Fasciitis (NM) Juvenile Myositis (JM) Orbital Myositis Write to us at mail@myositis.org.au if you have other Fact Sheets to share.

Mobility Aids – Useful links

Mobility Aids – Useful links

Myositis patients have particular needs in order to remain independent and mobile. Our members have supplied us with information about products and services they have found useful. Links to some relevant websites are listed below. A list of vehicles suitable for full conversion for wheelchairs is provided below. Please write to us at mail@myositis.org.au if you have…

Bed band exercises
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Bed band exercises

It’s normal to lose some muscle mass as we age. In fact, the average person can expect to lose 3 to 8 percent of muscle mass per decade after the age of 30! Fortunately, there are things you can do to slow muscle loss and maintain as much strength as possible throughout your life. This includes lifestyle interventions like eating…

Why do I feel tired?

Why do I feel tired?

A common symptom in people with muscle weakness is muscle fatigue, where after just a smallamount of activity or exercise, the muscle feels too tired to work effectively. Why then do peoplewith muscle disease feel tired so often? Firstly, let’s look at how muscles work in a person with no muscle damage. Its important to…

Use it or Lose it

Use it or Lose it

Health professionals advising myositis patients now encourage carefully tailored exercise. Early thinking advised against exercise, for fear of increased inflammation leading to weakness. Recent studies have shown that regular exercise may have an anti-inflammatory effect and can improve strength and daily function for myositis patients. Since 1993 there have been several published studies which have…

George Scott (dec)  – IBM

George Scott (dec) – IBM

Myositis crept into my world…. George passed away in 2017. He was instrumental in establishing the Victorian Support group – he understood, he cared and he made a difference. In addition to his IBM George had a battle with skin cancer and a brain bleed. George would say to other Myositis patients to take special…

Where are the treatments for the two million Australians with a rare disease?
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Where are the treatments for the two million Australians with a rare disease?

Sunday Extra with Julian Morrow It took Christine six years and many doctors visits before being diagnosed with Myositis – a rare muscle disease. Is genetic testing helping in the diagnosis of rare diseases? And what more can be done to develop therapies when the economic incentive for pharmaceutical companies is low?   Christine Lowe –…