May is Myositis Awareness Month
Globally this month is dedicated to raising awareness of this progressive, currently incurable and poorly treated group of rare conditions.
This is a time to come together for patients and carers battling this disease, as well as an opportunity to educate the public on this group of extremely rare conditions.
Nationwide, Myositis patients, their families and carers are again recognizing May as International Myositis Awareness Month.
Unless you have a friend or relative with one of the forms of Myositis, you’ve never likely heard of it.
The Myositis Keep in Touch Group started in 2003 with 12 members. It has grown over the years and as a result of this, the group became incorporated in March 2007, taking the name Myositis Association-Australia Incorporated.
In 2023 The Myositis Association – Australia Inc had grown to over 470 members and celebrated its 20th anniversary of ‘Keeping in Touch’
“It’s important for us to utilize the media to inform the public about Myositis. Many people suffer with Myositis alone, for years, before finding other patients they can relate to. If we can tell our story and spread the word to help or encourage other patients, then it’s worth the effort,” says Anita Chalmers who was awarded an OAM in 2018 for her volunteer work with Myositis in the community and with the Association.
One of the Associations key function’s is putting newly diagnosed patients and carers in touch with others to share experiences and provide support. We have set up member’s groups in Sydney, Perth, Brisbane, Adelaide and Melbourne, as well as a number in regional areas, in all states.
Meetings are both in person and online. Membership is now 650.
The Myositis Association Australia Inc is a Registered Charity run by volunteers with objectives of:
- education and awareness
- care and support
- research and information
More research is needed for Myositis. Australian medical researchers have the expertise, a strong interest in the disease and the patients are keen to support and advocate.
The research which is underway, is looking to make a positive impact for patients, however locating funding is always a challenge.
Most funding comes from bequests and small fundraising events and is limited.
With sustainable funding, the Australian researchers have the potential to be world leaders in Myositis research, to find a cure or at least some form of treatment to slow the progression and symptoms.
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BACKGROUND
Myositis is the general term used to describe inflammation of the muscles.
Myositis is pronounced My-o-sy-tis.
There are a number of forms of Myositis. The majority of our members suffer from Inclusion Body Myositis for which there is no cure or treatment.
Myositis is considered rare, incurable, progressive and poorly treated. An estimated 1:100,000 people are affected in Australia.
Inclusion Body Myositis (IBM), Dermatomyositis (DM), Polymyositis (PM), Necrotizing Myositis (NM or IMNM), Antisynthetase Syndrome (ASyS) and juvenile forms of Myositis are all considered inflammatory myopathies or forms of Myositis.
Some forms of Myositis cause a progressive weakness and loss of muscle. Over time it has a direct major impact on mobility and catastrophic falls are frequent.
Classic myositis symptoms can include: difficulty in climbing stairs, rising from the floor, getting off a seat, walking any distance. Other muscles can also be affected such as the heart, breathing, swallowing, hands, fingers and lower legs (foot drop). In the case of DM or ASyS, serious skin and lung changes can also occur.
Other impacts are the uncertain future due to the progression of the disease, daily living frustrations, access to support and impact upon family and carers. These issues often affect mental health and relationships.
Myositis is primarily thought to be an autoimmune disease, where the body’s immune system attacks normal, healthy arm and leg muscle tissue and at times the muscles that control breathing and swallowing
