D.E.B.R.A. conference here

Waimarino Bulletin, Volume 6, Issue 228, 26 January 1988, Page 13

D.E.B.R.A. conference here

Members of one of New Zealand's most exclusive groups have little to celebrate. They are sufferers o f Epidermolysis Bullosa - a severely debilitating disease that robs those afflicted of one o r more Iayers of their skin which results in blistering and bleeding after even the mildest o f knocks.

The disease may manifest itself as 'simplex' or 'dystrophic', the latter being the more serious condition which leaves victims scarred for the rest of their lives. In either condition, the loss of selfesteem, social withdrawal, feelings of isolation, depression and shyness are as devastating as the disease itself. There are just 70 known sufferers in New Zealand but the number is steadily increasing as awareness of Contd on back page

DEBRA

Contd from page 13. the condition grows, according to Ohakune resident Val Parkes who has an EB sufferer in her family. "Five years ago, people had never heard of the condition," she said. This weekend a group of 38 adults and nine children - sufferers of EB and their supporters, converge on the Waimarino for DEBRAs annual general meeting.(DEBRA being the abbreviation for Dystrophic Epidermolysis Bullosa Research Association) Amongst those visitors will be the Australian representative for DEBRA, Bob Morgan, and spokesmen for Kempthorne Medical Supplies, Auckland. The group will spend Saturday jetboating and picnicing at Pipiriki followed by videos and group support talks. Sunday features talks from health professionals and the 1987 report from the Australian DEBRA conference.