Some stories from our members
My Myositis Journey
Being diagnosed with a rare and chronic illness can turn life upside down, particularly when the diagnosis comes after months of uncertainty, unanswered questions and declining health. In this deeply personal account, one of our members shares their journey with Immune-Mediated Necrotising Myopathy (IMNM), a rare form of myositis, from the first unexplained symptoms and…
How To Prepare Yourself for Residential High Care
Graeme Eggins is a retired foreign correspondent and magazine publisher has Inclusion Body Myositis (IBM). Please Note: Government policy is in a state of flux, and some of the requirement may change in future. He has kindly provided this detailed guide for use when considering the move to Residential High Care. Graeme lives in high…
Antarctica: Yes, Even With Myositis
By Peter Williams Peter, based in WA, was diagnosed with Inclusion Body Myositis five years ago. Committed to staying active through gym work, swimming and Pilates, he believes a diagnosis does not define what remains possible, though it may change how you pursue it. In 2026 he reached his seventh continent, Antarctica, guided by one…
Ron’s Journey IBM 2022 – 2025
Note: Ron had generously shared his original MyoJourney from 2022 below. Three years later, he provided an update on his journey. While some readers may find the progression of Ron’s IBM (Inclusion Body Myositis) somewhat distressing, this is his personal story. Admirably, in 2025 Ron continued to maintain a positive outlook and was committed to…
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…
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
Share Your Story
If you would like to submit your personal story or are interested in being interviewed by MAA please complete the form below. We will contact you if we require any additional information.