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About me:
Just a little bit of background information.
News:
What I've been up to and what I'm planning on getting up to!
Merchandise:
Buy neat stuff here.
E.B. Resources:
A short guide to E.B. Links to further information and support groups.
Supporters:
People and groups that have supported me through the years.
Contact Me:
Please feel free to get in touch for bookings, enquiries or any other reason.
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E.B. Resources:
It is estimated there are around 700 E.B patients in Australia.
E.B. ranges from cases mild enough that they can live a fairly normal life without people noticing anything different about them, right through to the most severe forms of this disease like myself. I have a particularly aggressive form of E.B. A large number of people with this type simply don't survive past their childhood.
I have lived past all expectations to become one of the oldest survivors with this form in Australia today.
The Dystrophic Epidermolysis Bullosa Research Association (DEBRA)
DEBRA raise funds for research into a cure and also to directly support families with E.B.
As someone who has directly benefited from the work that DEBRA continue to do, I urge you to take a look at their website and help support this vital group whenever you can.
DEBRA Queensland DEBRA Australia DEBRA International
If you're not in Australia: The Member Groups section of the DEBRA International site will help you find a branch closer to home!
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A short guide to Epidermolysis Bullosa:
E.B. can strike anywhere with no particular location, sex or ethnicity faring any better or any worse.
It is a genetic defect, you are born with it, you cannot catch it.
Briefly, what happens is that the different layers of the skin are not properly anchored down. This means that they can pull free easily and the skin has no strength.
Lesions & blisters will occur, often at even the slightest injury and can take a very long time to heal.
In many ways these blisters are the same as those you would experience if you were to burn yourself, and they are just as painful.
The condition is not just limited to external symptoms. Depending on the severity of the case, E.B. can also cause ongoing oral and gastrointestinal tract problems amongst many other things.
Health AtoZ has a far more detailed medical explanation, should you wish to learn more.
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