Over the course of at least 12 months, I noticed changes in my body. I knew something was wrong. Tuesday 4 July 2023 is a day I will never forget as it was the day my voice was heard. A doctor finally listened to me. And then the testing began.
I had endless appointments and eventually, a rare disease diagnosis I had never heard of: immune-mediated necrotizing myopathy (IMNM), a type of rare myositis.
Testing to establish this diagnosis was relentless. I had blood tests almost daily, computed tomography (CT) scans, magnetic resonance imaging scans, positron emission tomography (PET) scans, X-rays, electromyographies and a muscle biopsy on my right thigh.
Soon enough, I learned I was dealing with something that was not well understood by most medical teams. I needed more expert help and started searching nationally and internationally. After hours of research, I found a specialist that manages patients diagnosed with all forms of myositis and thankfully, my application to the specialist’s clinic was accepted. Soon after, I was referred to and reviewed by all the ‘ologists’ – neurologists, immunologists, rheumatologists, physiotherapists, speech pathologists, occupational therapists, haematologists, pulmonary specialists and oncologists. The list was endless.
After four months and a total of six weeks in two different hospitals, I was diagnosed with IMNM, a rare autoimmune muscle disease. While the news came as a complete shock, I mostly felt relieved to finally have an answer. IMNM is a type of rare myositis and is also known as necrotizing autoimmune myositis/myopathy (NAM).
There is no cure; it is an invisible disease. I look ‘normal’ on the outside but am far from normal on the inside. Doctors don’t know what caused this disease. My life has completely changed since my diagnosis, but with a smile on my face, I will continue to dance with the invisible. “Life is not about waiting for the storm to pass, it’s about learning to dance in the rain” – Vivian Greene.
