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Articles from the Archives of DebRA (SA)

From the editor: it is intended that the information in the article archives of this website is for the lay person who seeks to better understand the condition called Epidermolysis Bullosa. This information is intentionally presented at an elementary level to inform supporters & donors who have no personal experience of the debilitating skin condition.

The links page on this site will direct you to the medical research and more in-depth sites available on the world wide web.

Australian Inaugural National eb Conference:
May 16-18 2003 Adelaide South Australia

Gossamer - a conference to get under your skin.

Notes compiled from reports in the NSW Newsletter of June 2003

Yvette Walker: eb Nurse: Wrapping it Up.

This article briefly describes the various forms of eb, the actual dressings found beneficial to eb wounds and the differences in dressing the various forms of eb.

Types of eb

DYSTROPHIC eb - perhaps the most demanding form of eb in relation to dressings. The two main types of dystrophic eb are dominant and recessive with a significant difference in severity not only between the two forms but also within each form. Dystrophic eb needs protective absorbent dressings on wounds.

SIMPLEX eb - this form of eb is better treated with light and minimal dressings. Simplex eb blisters are exacerbated by heat and the more dressings applied the warmer the skin underneath will become. Once the deep wounds have healed the skin responds well to light dressing or an application of cornflour.

JUNCTIONAL eb - is sub-grouped into non-Herlitz and Herlitz eb. It seems that the wounds of children and adults with non-Herlitz eb respond better to absorbent, bulky dressings. Herlitz eb as a rule is fatal in early infancy. It is difficult to find dressings that suit the tiny baby and offer a comfortable but tragically shortened life.

Dressings
There are a vast number of dressings on the market and people have their own preferences. Dressings are very important in the care of eb skin, however there are now creams available which have a dramatic and positive impact on the eb wounds.

Three dressings are featured in this article:
(1) MEPITEL - a soft silicone wound contract layer dressing which is ideal for all forms of eb. The structure of Mepitel allows the blister fluid to pass through the dressing thus preventing the outer dressing garment from sticking. Thus trauma to the wound is minimized and pain to the person with eb is lessened. Mepitel may also be used in conjunction with cornflour to prevent the outer side of the Mepitel from sticking to clothing.

(2) MEPILEX - incorporates the primary dressing of Mepitel with a secondary foam dressing to absorb and protect. It is manufactured to draw fluids away from the wound and to absorb fluids into the additional padding. This dressing may be left on for 3 days to a week depending upon the wound and how often one bathes. Leaving the dressing on for a longer period reduces the chance of epidermal stripping which can happen when the wound is constantly being disturbed.

(3) MEPIFORM - is an important dressing for all person with eb who may be undergoing surgical and medical intervention. Although it is primarily used as a scar dressing for normal skin it has been found to be invaluable as a tape for fragile skin. The key in the use of Mepiform on fragile skin is in the removal technique which differs from persons with non-affected skin.

Click here
to read an article by
Jim Renshaw

The Thin Skinned Kids

Following is the content of a letter prepared by the National Association for eb supporters to send to local politicians to raise awareness of the need for financial support for families bearing the cost of wound dressings ... this article is presented for your information.

DRESSING ISSUES
People with EB require a multidisciplinary team of specialists to ensure adequate ongoing care. To put requirements into perspective, burns victims require dressings for months until they heal. People suffering from EB have similar dressing requirements but for their entire life. Dressings are to EB people what insulin and needles are to diabetics.

In some types of EB, for those fortunate to make it to early adulthood, there is the added risk of skin cancers that can also cruelly cut their life short. Not to mention the years of wounds and scarring which can rob them of the use of their hands and feet, leading to permanent disabilities and reduced mobility.

In Australia, in most cases, the only carers available are the parents. Children and adults require large amounts of support to bathe and do dressing changes that can take up to four hours a day. After all this is taken into account, many families still need to buy top-of-the-line silicone dressings that are expensive and not generally available through the various health systems within Australia.

Adequate dressings reduce the rate of infection and subsequent use of antibiotics and lengthy hospital stays.

CURRENT DRESSING SYSTEM
There is no national scheme to access dressings in Australia for people with EB. Members have stated that they have to beg for dressings via the local hospital and if successful often have to settle for less suitable, cheaper products or even go without. For those who do have access to dressings, there are different processes for each state, area and even within hospitals, which also causes confusion.

A national dressing survey conducted by DebRA QLD in 2005 found:
* Only 35% of DebRA members who completed the survey are able to access dressings via the public system.
* 40% of respondents were not aware there were other dressings available that were more suitable for EB dressings.
* 45% of members have problems accessing dressings because of expense or availability, of these dressings not accessible, 85% of them are silicone dressings now used for best practice techniques.
* In a perfect world the majority of members would like to access dressings via the public system and have them delivered.

Of those 35% of members who can access dressings from the public system:
* 65% of members get the types of dressings they require with the remaining 35% of members sometimes or always having to take alternative dressings.
* 65% of members find the process confusing on a regular or sometimes basis.
* 50% of members are always or sometimes made to feel guilty that they access dressings on an ongoing basis via the public system.
* 71% of members have found that they regularly or sometimes experience that their dressings are on back order, causing them to be short of dressings.

IDEAL DRESSING SYSTEM
DebRA members would welcome the opportunity to implement a national arrangement with the Health Department similar to one that has been introduced by the Health Minister in New Zealand which consists of the following:
* A register of people with EB who require dressings is managed by a dermatologist on a national basis.
* All dressings required are delivered via the local public hospital system on a monthly basis to people with EB.
* Dressing requirements are reviewed on an annual basis to meet change in age and care requirements.
* If changes are required within the year individual applications are made to the dermatologist for approval.
* A multidisciplinary team of EB specialists are available to visit families with new babies born with EB, to provide support and adequate resources required in this very emotional time.

BENEFITS OF NEW DRESSING SYSTEM
* Reduced government costs for the number of hospital admissions, length of stay, infection control, surgery and skin grafting and other secondary complications.
*Uniformity of dressing system on a national basis to benefit 100% of people in Australia with EB.
* Reduced use of antibiotics and medications.
* Reduced hospital admissions and length of stay.
* Improved quality of life, physical and mental wellbeing for people with EB and their families.
* Increased attendance and participation at school, work and community events.

Our goal is that ALL people with EB in Australia can access relevant dressings free of charge in an acceptable timeframe.

Working for a life free from pain

DRESSING MY WOUNDS DAILY
article by Paolo Lucia
(coming soon)