Damian’s Journey – IBM
I never thought in my wildest dreams that I would be in a wheelchair.
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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…
Patient D’s Journey – IBM
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Myositis month presented an opportunity to reflect
LAST month was dedicated to raising awareness of a progressive, currently incurable and poorly treated group of rare conditions commonly known as Myositis. Myositis is the term used to describe inflammation of the muscles, and has a number of different forms. The majority suffer from Inclusion Body Myositis (IBM) for which there is no cure…
Support group offers hope for those living with myositis
Published in Shepparton News June 14, 2024 With incurable diseases such as myositis, taking care of one’s mind is most important. Having a solid support system of people who have been through something similar, who understand and can help you prepare, is a massive part of that. Myositis is a rare disease where the body’s…
A typical pathway to a rare condition – Patient L
Why am I taking SO much longer to trudge up the hill to the railway station ? Why am I finding pulling down a whiteboard so much harder? Why are stairs getting to be difficult? Why am I having so much difficulty carrying equipment from room to room? Why have I pulled a muscle in…
I am a Civil War
Dr Jennifer Mowbray, an Emergency Physician, shares her experience as a patient now dealing with a diagnosis of Immune‐Mediated Necrotising Myositis. Jennifer has also kindly shared her story she recorded while decreasing her doses of prednisolone. Read Jenny’s blog here
