Running for Robyn

Easter 2018 my mum was visiting from interstate. We swam 1km together at the local pool before she got a quick flight home to start her busy work week. She was a healthy, active 60yo pool lifeguard, loved her job and never had sick days. Mum also volunteered for the elderly, the young and she was a disability carer for children with ASD. She woke up the following morning with inflammation and pain in her arm. It soon spread throughout her body, to her face and resulted in sick days and a trip to ED. She was transferred to a larger hospital and eventually started treatment as outpatient under a respected rheumatologist. However she didn't respond to two different forms of treatment. By October 2018 mum weighed 43kg (94 lbs) the pain had worsened and she couldn't weight-bear or feel sensation from the knees and the wrists down. After another ED visit, she was transferred to the acute neuroscience ward at a large university hospital for over a month and eventually diagnosed with ANCA vasculitis with severe complications. She spent over two months at rehabilitation hospital learning to move again before being discharged. She requires a full time carer and works hard to walk three laps of her house each day with assistance. She hasn’t regained feeling or full function of her limbs yet and remains on immunosuppressive drugs.

I took up running with purpose last April/May when my mum started to experience pain and inability to do things for herself. In October I started a closed group for family medical updates, called Running for Robyn. Running with this purpose helped me get through the acute hospital days and weeks when we didn't know if mum would survive long enough for the doctors to work out what she had. I joined in some fun runs with my work colleagues which really spurred me on (thank you team!!). Next up is my first half marathon. So I'm Running for Robyn on April 28th at the UQ twilight event. Ten days and counting.

I want to promote awareness for this disease. The Vasculitis Foundation statement for awareness month suggests that Vasculitis is "More common than you think and more serious than you know". May is #Vasculitisawareness month and I'll be making a donation to the Vasculitis Foundation then. My goal is small!! If I can even make it to $200 I would be thrilled so I welcome even the smallest of donations. I'd like to work toward putting the Vasculitis Foundation Australia on the map so that others can be diagnosed and treated earlier.

For more vasculitis awareness follow this link:
https://youtu.be/9R2O0luqYuA