DebRA(SA) proudly supported by the Adelaide Crows

Stop! Imagine!

Stop & imagine your skin is as fragile as a butterfly's wings.
Blisters and wounds form at the slightest touch.

This is the reality for people living with Epidermolysis Bullosa -
commonly known as eb.

eb is a rare, distressing skin blistering condition that affects
approximately 1,000 people in Australia.
At its worst, it can be fatal in infancy but even in its mildest form
it causes a life of pain and disability.

It is hard to comprehend having to live with constant pain
and destructive scarring.

The Mission of DebRA Australia is to provide ongoing support and information for individuals, families and professionals
living & working with eb, ensuring all research & best practice treatments
are investigated, leading to improved quality of life for all.

DebRA AUSTRALIA

People with eb in Australia are supported by DebRA (Dystrophic Epidermolysis Research Association) at a state and national level. DebRA is a registered charity & donations may be made online from the national site at

www.debra.org.au

Please note: this is a secure site using the facilities of PayPal.

DebRA Australia is a non-profit organisation that receives no direct government funding. It is only through community awareness & support plus support from corporate Australia that DebRA can make a difference.

Our major sponsors at this time are Mölnlycke Health Care and Nu Skin Enterprises through the Force For Good Foundation.

WHAT DOES THE NAME eb MEAN?

The skin is a composite structure. The outer layer is called the epidermis: the inner layer is the dermis. Bullosa is simply the name for a blister, whilst dystrophic means mutilating. Lysis means breakdown of the epidermis.

This simply describes just one group of eb - there are other forms which are less mutilating.

WHAT CAUSES THE CONDITION?

The exact cause of the condition is not yet known and this is why further research is vital. Researchers have so far discovered that the fibres which normally anchor the layers of skin together of persons with eb, do not function properly.

They have also established that the cells which form the deeper fibres of the skin (collagen) produce defective substances.

Currently research is being carried out in the area of gene therapy. For further information visit our links page to explore other sites for up-to-date Australian & International information.

HOW eb MANIFESTS ...

In the simple types of the disease, blisters are confined to the skin & occasionally affect the mouth. Such blisters sometimes heal without permanently damaging the skin. Nevertheless, it causes discomfort & pain throughout the person's life. Normal social activities such as schooling can be significantly curtailed.

Scarring may cause severe deformity in parts of the body, but most notably the hands. Such scarring eventually leads to fusion of the fingers & thumb thus limiting the use of the hand.Plastic surgery may be performed however it is both difficult and painful.

Understandably, the real or imagined reaction of the public to the appearance of the skin may lead to withdrawal from social activities, to a sense of isolation, depression and defensive shyness.

As well as the obvious external affects to the body, eb commonly affects the mouth & other linings of the body. When the mouth is affected there is considerable pain & discomfort when eating - even with the mildest forms of the disease. This is similar to the pain & discomfort caused by mouth ulcers.

In severe forms of eb grave problems with eating & the scarring left after the blisters have healed may cause the person to experience difficulty opening one's mouth thus making eating & speaking even more of an effort.

A similar effect can occur in the gullet leavingthe person unable to eat properly for several days whilst the blister heals. Many children & adults alike need to have all their food liquidised. In some cases, it is possible for the gullet to become so narrowed by frequent blistering that food can no longer pass down it. An operation is then necessary to re-open it & this procedure may need to be repeated at intervals over the years.

The most extreme forms of the disease can be fatal. Infants can be born with areas of skin completely missing and the blisters do not heal.

THE FUNCTION OF DebRA AUSTRALIA

DebRA Australia, in association with the DebRA organisations in each state seeks to help persons with all types of eb:

* investigating & implementing all possible ways of helping people with this skin condition in their daily lives;
* providing counselling & support especially to the parents of a new-born child
* providing practical support by supplying essential pharmaceuticals & aids for the disabled e.g. bandages; wheelchairs
* educating persons with eb & the public about the condition
* publishing & distributing material for parents & workers
* providing an informal link between parents & professionals
* providing regular newsletters to members & the public
* encouraging people with eb to lead as full a life as possible
* maintaining links nationally & internationally with other eb associations & research agencies
* raising money for vital research into the condition.

Fundraising alone can bring real and lasting benefits to people with eb,
their families & to as yet unborn children
by providing effective treatment & detection of the debilitating condition.

eb - THE FUTURE ...

One thing is for certain ... WITHOUT YOUR HELP ... persons afflicted with eb will continue to suffer.

FUNDING is absolutely vital ... for research, treatment, support & counselling services.

As you can imagine, for persons with eb their plight is desperate. As you can imagine, for DebRA organisations the need for funds is critical. By donating to DebRA Australia you will be contributing to a valuable, internationally recognised self-help group.

Your financial assistance will not only bring urgently needed relief to present sufferers, it will help to save those children, not yet born who inherit this devastating affliction.

TO DONATE ONLINE:

www.debra.org.au

TO DONATE SPECIFICALLY TO THE SA ORGANISATION:

Please post your cheque made payable to DebRA (SA) to:

DebRA (SA) Funds
PO Box 1214
Mt Barker SA 5251

Please provide your name and full postal address so that we can
send you a receipt for your donation.