DebRA Highlights the need for National Dressing Scheme for EB sufferers

National Dressing Scheme urgently needed for EB sufferers

Epidermolysis Bullosa (EB) is a rare and debilitating genetic skin condition affecting only 1,000 Australians. At its worst, EB is fatal in infancy and even in its mildest form causes a life of constant pain and disability. Many EB sufferers require medical dressings to protect and repair damaged skin, promote healing and help reduce the risk of infection. These dressings can take up to 4 hours a day to administer and can cost working families up to $4,000 per month.

Currently there is no national EB dressing scheme to assist Australian families who struggle with this medical cost. Some EB patients are provided with dressings by local hospitals, DebRA Australia and other charitable organisations, but most are not. Additionally, DebRA Australia receives no government funding to assist with their dressing service. All of DebRA Australia’s income comes from donations, sponsorship and or grants.

DebRA Australia
DebRA Australia, founded in 2005, provides ongoing support and information to individuals and families living with EB and the professionals working with them. A high priority is to also fund research into treatments and a cure.

The national organisation is made up of DebRA organisations in NSW, SA, VIC and QLD and is a member of DebRA International. DebRA International plays an important role in providing information and systems support to the smaller DebRA organisations.

National EB dressing scheme campaign
One of the main focuses of DebRA Australia is to lobby the government for a much needed EB dressing scheme. Another is to have trained EB nurses in hospitals to identify EB babies and offer immediate support to the families.

For many years there has been a successful EB Dressing Scheme in New Zealand and the UK where all people can access dressings free of charge via the Public Health System. People in Australia deserve to have their basic health care needs met in this way.

Helping families
DebRA runs a number of programs to support and educate members and their families as well as offering advocacy and helping to promote independence.

A bi-annual National EB Camp help to reduce the isolation felt by many members by connecting them with others who share the same hardships and providing a network of support and education for members and their families.

“Guided Imagery – Pain Management” courses were held in four states around Australia last year educating members on different strategies of coping with the constant pain they live with.

DebRA also has a “Follow Your Dreams” grant process available to members who apply for help to achieve their dreams.

Reaching out to our neighbours

Recently DebRA Australia supported a young girl with EB from the Philippines, named Joy, to travel from a remote island to a major city to gain specialist treatment and testing. Together with other DebRA organisations around the world, DebRA can make a difference improving care and quality of life for many young children just like Joy.

For more information on DebRA visit www.debra.org.au or if you have any comments email secretary@debra.org.au

We are small
We are rare
But we do count

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