A ground-breaking New Zealand EB initiative has been the design and use of separate purpose-built bathing and bandaging rooms.
The room ensures the bandaging process is kept as sterile as possible, with the shower, bath and toilet used only by the person with EB. Storage hides away the many boxes of bandage supplies, food supplements, and hospital linen.
Home-based care plans with these facilities avoid unnecessary hospital admissions. Wellbeing of the whole EB family unit is maximised. Very significantly this facility allows home to be more of a normal family home, with the ‘un-fun’ painful EB stuff moved to the sideline, confined in its own territory well away from the child’s bedroom and the family living spaces. The focus is on well being and normal family life, subtly minimising EB’s impact.
In 2008 a generous West Coast businessman began a campaign to raise funds to build a specific bandage changing room for Holly Gilshnan. Hundreds of people donated time, money, equipment, construction materials, and items to build and furnish it. This state of the art space makes a huge difference to Holly’s life.