Motorbike ride raises funds for incurable disorder – EDS

Claire HealeyShe battles with chronic pain every day but is going on the adventure of a lifetime.

Claire Healey suffers from Ehlers-Danlos Syndrome, a disorder that affects her connective tissue.
She’s also a passionate motorcyclists and is determined to travel 14,000 kilometres in 35 days on her motorbike, raising money and awareness for Connective Tissue Disorders (CTD).

“A Connective Tissue Disorder is probably best likened to an elastic band,” she says.
“People think of collagen and they think of anti-ageing products but collagen is the glue that holds our bodies together and basically individuals with CTDs, our collagen is defective.

“So people with normal collagen, basically an elastic band will stretch and it will come back to its original shape but people like myself with CTDs, our elastic bands just keep stretching and stretching until it gets so thin that it tears away.
“So one of the ramifications is lots of dislocations and heart issues.”

Read More: ABC.net

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Riding around Australia for charity

CLAIRE HealeyCLAIRE Healey will cover thousands of miles around Australia in a bid to help others battling the condition that has given her thousands of dislocated joints.

Leaving Sydney on September 1, the Ride Around Australia for Ehlers Danlos Syndrome organiser and leader will circumnavigate the country in 35 days to raise money and awareness. Ms Healey, a Sydney-based information technology executive, will pass through the Hunter on her first day with her support team, which includes her father, prominent Newcastle barrister Terry Healey.

Ehlers Danlos Syndrome is a genetic condition that creates faulty collagen and leaves her joints unstable and fragile, among other symptoms.

Read More: The Herald