Butterfly children to get specialist nurse service

Health Minister Tony Ryall says the Government will help fund part-time specialist nurses who travel around the country supporting treatment for the debilitating skin condition, Epidermolysis Bullosa (EB).

EB can be debilitating and some people with it are completely incapacitated by it, as their skin breaks down and blisters at the slightest touch.

Young people with the disorder are known as butterfly children as their skin is likened to the fragility of a butterfly's wings.

"EB is so rare that most doctors or nurses would have no experience with the condition or how to look after a baby with skin so fragile it can't even be picked up without causing blisters and wounds. It is crucial to have expert advice on the best care and treatment for EB, especially when a new baby is born, "says Mr Ryall.

"DEBRA, the support organisation representing people with EB fully funded part-time nurses for eight years, but a serious decline in fundraising income has put this essential service in danger."

The National Health Board has arranged for three specialist EB nurses to be employed through Capital and Coast DHB and located at Auckland, Wellington and Christchurch. They will provide clinical advice when a new baby is born with EB, manage ongoing care and support local medical professionals. 

They will also provide clinics alongside New Zealand's two specialist dermatologists trained and experienced in EB management.

"A nationally coordinated, specialised nursing service will make an enormous difference to the 120 children and adults with EB and their families. It has the potential to improve patient care and outcomes and reduce hospital admissions."