Ehlers-Danlos Syndrome (EDS) affects about 1 in 5000 people worldwide. It is a genetic tissue disorder that affects how collagen is structured and processed in the body.
There is no known cure to the condition, which is usually treated supportively. The condition can shorten the lifespan of those who have it.
Little to no support for the condition exists in Australia. But Robin Eames, an EDS activist, has just launched the Ehlers-Danlos Network Australasia, aiming to help those with the condition find information, support and medical aid.