Mums Story

In her early 40s, my mum began a journey that would alter the course of her life. Slowly, she experienced weakness and overwhelming fatigue, to the point of having to stop work. As she humorously put it, “chairs, stairs, and toilet seats became my worst enemies.”

Sadly, as is common with many struggling with uncommon illnesses, the path to a diagnosis was long and arduous. Specialists often dismissed her descriptions and physical symptoms, leaving her questioning if it was all in her ‘head.’ She faced challenges like frequent falls, fatigue, climbing up and down stairs, difficulty with daily activities, and numbness down her arms and legs. Shockingly, a neurologist in Wagga advised, “go home and do squats.”
Fortunately, a pivotal moment came in March 2015 when her GP, not yet permanent at the time, conducted muscle strength tests during a review, identifying a myopathy. Swiftly, she was referred to a wonderful Neurologist at St Vincent’s in Sydney, where a battery of tests began – blood tests, nerve conduction tests, heart MRI, scans, and a muscle biopsy that initially suggested Polymyositis.

Approximately 18 months later, the second muscle biopsy revealed the true diagnosis: Inclusion Body Myositis (IBM). While treatments like steroids and Immunoglobulin (IVIG) have provided relief, my mum acknowledges her fortune, knowing this isn’t the case for everyone.

Now, in her day-to-day life, she struggles with mobility challenges, relying on a wheelie walker or wheelchair for support. The frustration of minimal awareness surrounding IBM adds to the difficulties, especially considering the potential delays in diagnosis faced by others.
As we move forward, trials for different treatments offer hope.

This is where I seek your support – to raise funds for these trials and to amplify awareness among individuals and medical professionals alike. Together, let’s make strides towards a brighter future for those battling Inclusion Body Myositis