DebRA for EB Awareness Event ஐ

Dear Readers,

Please take the time to watch the videos,

However, I must warn you that they are not suitable for everyone.

Uploaded on Nov 7, 2011

EJ has Epidermolysis Bullosa (EB) 

The Worst Disease You've Never Heard Of

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What is EB?

Epidermolysis Bullosa (EB) is a rare genetic skin disorder 

that causes the skin to be so fragile that the slightest friction 

can cause severe blistering - inside and outside the body. 

It is present in 1 out of every 50,000 live births in the US. 

It can occur in every racial and ethnic group, and affects both sexes equally. 

There is currently no cure, and the research is on-going. 

Severe forms of EB cause patients to live with constant pain and scarring. 

The worst forms of EB lead to eventual disfigurement, 

disability and often early death. 

There are many patients who are diagnosed with milder forms, 

which, while they can be extremely difficult to live with, 

are non-disfiguring and non-lethal.

SOURCE

VIEW IMAGE ON FLICKR

DebRA
EPIDERMOLYSIS BULLOSA
EB AWARENESS EVENT
in Second Life
has been extended to May 12

SLURL

http://maps.secondlife.com/secondlife/Myth/138/123/22

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What is DebRA of America?

The Dystrophic Epidermolysis Bullosa Research Association of America (DebRA), 

was founded over 30 years ago in New York City and is the only national nonprofit organization 

dedicated to funding research and providing supportive services and programs for those 

with Epidermolysis Bullosa (EB) — The Worst Disease You've Never Heard Of.™ 

Some of the programs and services we provide are; 

wound care supplies shipped directly to patients, 

an EB Nurse Educator, education, new family packages, 

and money for research towards finding a cure for EB. 

There is currently no cure, and the research is on-going. 

Treatment is supportive and includes daily wound care, 

bandaging, and pain management. 

For more information, visit debra.org

SOURCE

Underneath the bandages...

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Once again, I encourage everyone to continue to participate in this nobel cause

by attending this event where over 40 generouse designers have come together to

HELP SET THE PAIN FREE

by donating a portion of their sales to this wonderful cause.

Remember that every bit counts.

Or you can

DONATE NOW

Forever Yours,

~ Lori Novo ~
❤