DEBRA NZ founded the EB Specialist Nursing Service in 2002 to support people with the rare skin condition Epidermolysis Bullosa (EB).
The EB Nursing Service is now managed jointly by the National Health Board and DEBRA NZ.
Jacqui and Sharon, DEBRA nurses
Our Specialist EB Nurses provide support and advice to those living with EB and their families and assist local clinicians and District Health Boards who may not be familiar with the latest best practice in EB management.Based in Auckland and Christchurch, the Specialist Nurses are available to visit and advise on EB care anywhere in New Zealand.
The DEBRA Nurses are in contact with expert EB Nurses and clinicians around the world to ensure they have access to the best information and advice.
When a new baby is born with EB, it is very important the Specialist EB Nurses are contacted as early possible. They can visit within hours or days, depending on the urgency. Some aspects of correct EB care can be life-critical for newborns.
For children and adults with EB the Specialist EB Nurses overview and advice can contribute to reducing severe pain and increasing wound healing. Home based care-plans minimise infections and avoid unnecessary hospital admissions. The wellbeing of the whole EB family unit is a primary focus.
When someone with EB requires surgery the EB Specialist Nurses can act as consultants and assist in theatre to minimise skin damage.
DEBRA and the EB Nurses encourage contact with other EB families for support, understanding and advice.
The Specialist EB Nurses contribute to maintaining the NZ National EB Patient Register which then allows New Zealanders with EB the right to access specialist dressings for free.
EB is rare, but you are not alone. DEBRA and the EB Nurses encourage contact with other EB families for support, understanding and advice. If you would like to be put in touch with another family, please let one of the nurses know or contact DEBRA NZ.
The EB Nurses work part-time, mainly between 9am and 5pm weekdays.
For non-urgent inquiries please try to contact them between these hours, but for urgent concerns contact the EB Nurses or DEBRA NZ any time.
Home visits by the EB Nurses are arranged on an individual basis at times and frequencies that best meet the needs of clients and families.
If using Hypafix or other gentle tapes to hold dressings in place, it can be easily and painlessly removed by dissolving the sticky stuff with either "remove-it" that comes in little sterile swab packets, or with a spray bottle of Dissolve-it from the hardware store. … Read on