Researchers fight to combat rare skin condition

Australian researchers are stepping up the fight to help treat people with Epidermolysis Bullosa, a rare skin disease causing painful blisters that don't go away.

The Azney family moved from Malaysia to Australia to better care for their two children, who suffer from a rare skin condition. Source: SBS

HIGHLIGHTS

• Up to 1000 people in Australia are living with a type of Epidermolysis Bullosa and there are about half a million worldwide
• A number of clinical trials to better treat the symptoms of the disease are currently underway in Europe and North America, including at Stanford University in California
• Researchers from the University of South Australia are developing a new antibody therapy for painful blisters

Lise Angus, general manager of not-for-profit advocacy group DEBRA, says up to 1000 people in Australia are living with a type of Epidermolysis Bullosa and there are about half a million worldwide.

"Everybody is working towards it globally, but the cure is a way off so in the meantime it's about ensuring that quality of life is really the best it can be for those living with it. We have three main services that we offer, so we have our in hospital nurses, we have in-home nurses to help with dressings so that parents can just be parents and love their children and not inflict pain."