Network provides key support

KYLIE LANG'S every movement, every day, is a challenge for her.

Miss Lang, 27 of South Penrith, has the little-known genetic condition, Ehlers-Danlos syndrome (EDS), which weakens collagen, the body's "glue" binding connective tissues to organs.

"When I wake up, before I even get out of bed I have to make sure I'm all right," she said.

"I have to assure myself everything is in place."

She said the slightest unco-ordinated movement could dislocate her shoulders, hips or fingers.

"Even dressing myself has to be a calculated event," Miss Lang said.

People with EDS can have ligament tears, bone fractures, gynaecological problems and sensitive skin.

There is no known cure or effective treatment for the disease, only management of its symptoms.

Miss Lang's life hit a low point six years ago when a dislocated disc temporarily paralysed her.

But she fought back, learned to walk again and reached out to others with her illness through an online support network, EDSAUS.

It provides information and emotional support.

"In 2006 I had to give up my career because I was paralysed; that was devastating," Miss Lang said.

"I was a veterinary nurse, which I loved, and an animal rescuer with WIRES."

EDSAUS has give her life new purpose.

"In 2008 I found there was no support network in Australia, so we developed EDSAUS," Miss Lang said.

"We now have 600 members."

It adopted the zebra as its symbol, "because hoof beats usually mean horses, but zebras also have hoof beats, but are less common".

Miss Lang also supports theConnecTeD Foundation, a charity helping people with connective-tissues diseases.

"My goal is to help other people with EDS get the information and support they need," she said.

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