The torture of Stiff Person Syndrome
BEN OAKLEY is a young Aussie who unapologetically breaks the law twice a day to fight an illness so fearsome that it almost destroyed him.
At 17, he fell victim to a one-in-a-million disease that strikes the nervous system, known as Stiff Person Syndrome.
It relentlessly shocks the body with “Taser-like” pain and progressively stiffens the muscles in the spine and legs.
Oakley, from Wollongong south of Sydney, had just finished year 10 at a Catholic high school when his life’s trajectory was thrown violently off course. Up until then the go-getter teen thought nothing of running half marathons or taking part in charity bike rides.
His plan was to join the navy and work in border control or become a racing driver. “I’ve always loved speed ... I remember one year in the City to Gong bike ride when I reached 110km/h heading down through the Royal National Park...
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