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feature muscle were weak. She was given no instruction on managing her continence, she said, and had “huge issues”. “I learnt to void by making a fist and pushing down on my abdomen. And as far as bowel motions, they just Getting on with it Suzanne Twelftree has achieved much in her 60 years, including raising three children while running a farm with her husband, and competing in two sports at an international level. S Fifteen years later, at age 30, as a stay-at-home mum with three children under six, running the Yorke Peninsula farm with husband Greg, the AVM haemorrhaged again. The damage this time was much more severe, and she became a paraplegic. “I had to learn how to balance, drive a car with the different controls, how to do transfers, how to get dressed – everything.” After 15 years of self- uzanne has arteriovenous the waist. This was to be the first of management, her bladder malformation, or AVM, a four major bleeds Suzanne endured dysfunction was finally explained and rare congenital disorder that during the next 30 years. she was given instruction on self- affects one in 100,000 people. AVM But at age 15, the damage was is a tangled clump of blood vessels, contained, and six weeks after surgery often located in the central nervous Suzanne was able to walk again. Her years later. This time it became system, vulnerable to haemorrhaging. home rehab physiotherapy, she says, apparent the AVM was now life- While 88% of people with AVM have was “a tiny piece of paper with stick threatening, tracking towards her no symptoms, for a small proportion, figures drawn on it”, handed to her as brain. After 20 hours of surgery, the AVM can haemorrhage and, she left hospital. Suzanne returned to Hampstead depending on its location, cause significant damage. Although Suzanne was able catheterisation. The next haemorrhage was four Spinal Unit in Adelaide for to walk, the nerves that control rehabilitation. This was to be the her bladder and bowel had be en genesis of her international sporting Suzanne’s lower spine haemorrhaged, permanently damaged. Her bladder career, at age 34. causing so much damage she couldn’t contract to empty, and her “One day I pushed myself to the became temporarily paralysed below defecation reflex and anal sphincter wheelchair sports centre, which was At the age of 15, an AVM in 40 kind of happened.” incontinence and personal care linkonline.com.au