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Imagine if
...
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the touch of clothing tears off your skin.
• your feet blister under your own weight.
• a tiny strand of hair in your eye makes it swell and blister.
• your throat rips and scars when you eat normal food.
• it takes three hours every day of your life to treat and
dress your wounds...
This is the
reality of living with Epidermolysis Bullosa or EB–a rare,
distressing, skin–blistering condition.
Find out more
about the
EB Awareness Campaign
Read up on some
Helpful Hints for E.B
To contact DEBRA NZ email: debranewzealand@gmail.com
or ph. +64•4•3897316 |
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What is EB?
Epidermolysis Bullosa, known as EB, is the name of a group of genetic disorders causing blistering and shearing of the skin from even the gentlest friction, often from everyday activities. Three main types of EB have been identified, (Dystrophic, Simplex and Junctional) with many different sub-types. EB can vary from a relatively mild condition to an incapacitating, and sometimes fatal, disorder.
Latest News!
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Click here to download the latest DEBRA NZ
Newsletter April 2008
Click here to read the DEBRA NZ , June 2007 Newsletter. |
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Click here to go through to TV3's 60minutes segment on living with EB in New Zealand |
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Click here to view the latest EB advertising campaign created by DEBRA Austria
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What
is DEBRA NZ?
In New Zealand there
are a handful of children and several adults with severe EB. A larger
number of people have milder strains, but still bad enough to make life
challenging.
Click on the links
to read more of their stories.
Humphrey
Ashley Holly
Damien and Samantha
Very few New Zealanders
have any contact with EB and it is difficult to realise that their special
needs do not fit into any mainstream charities.
Everyday, our EB kids are wrapped head to toe with special protective
bandages, their wounds are bathed and dressed in sterile dressings.
This web site has
been created to support and inform. In it we hope to update information
on whats happening here in New Zealand as well as to create a resource
for families needing support.
We appreciate the support of FINZSOFT.COM for providing hosting services for our website.
Click here
for Extensive information about EB
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