WHEN Mornington woman Sandra Franks had difficulty getting up from her chair when she was in her mid-60s, she initially just thought age was creeping up on her.
“I had no push in my knees and was struggling to bear weight when trying to stand, so eventually I went to my doctor, who was baffled and sent me to a specialist,” she said.
After getting no answers from the first specialist, Franks sought a second opinion and underwent a muscle biopsy that led to her diagnosis.
While it was a shock to discover she had myositis, an incurable and progressive disease, the now 70-year-old said it was a relief to finally understand what was happening to her.
Myositis is a rare group of diseases characterised by inflamed muscles, which can cause prolonged muscle fatigue and weakness. The group includes the autoimmune disorders juvenile myositis, dermatomyositis and polymyositis, as well as inclusion body myositis (IBM), which Franks has.
Since her diagnosis in 2018, the disease has robbed her of the ability to drive and has affected her balance to the point where she has great difficulty walking unaided.
“I have to have a flat surface to walk on and can’t do steps, and I can’t do doorways unless I hold on to the sides,” she said.
“It’s a positive thing to spread awareness, because there is still a certain amount of mystery surrounding the disease and how it affects different people.
“I used to get a lot of questions about when I might ‘get better’, so I guess understanding the disease means I don’t have to keep explaining it.”
May is Myositis Month, and the association is ramping up its publicity campaigns by sharing personal stories from members about the various forms of this rare disease and the activities of the association.
Franks says she would have felt lost without the support provided by the Myositis Association Australia.
“Of course it was a shock, I had not heard of myositis before and my doctor didn’t know much about it either, so it wasn’t until I joined the association that I had the support and information I needed,” she said.
The association works as a support and advocacy network, keeping members in touch with each other, raising awareness of myositis and supporting Australian-based research. The end goal is to find ways to prevent and treat the disease and improve the quality of life for those living with myositis.
The peninsula-based group holds regular coffee catchups, where members can share information, treatment, exercise tips and updates on myositis. It will hold a catch-up lunch for peninsula sufferers at Steeples in Mornington on 27 May.