PLEASE PARDON OUR DUST!
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What is Epidermolysis Bullosa?
Epidermolysis
Bullosa is the name given to a blistering condition that varies widely in
severity and forms.
There
are many who are diagnosed with milder forms which, while they
can be extremely difficult to live with, are non-disfiguring and
non-lethal. Other patients are much more fragile, much more
severe, and live in constant pain and scarring, which, in the
worse forms, leads to eventual disfigurement, disability and
often early death.
EB is an inherited disease that,
according to the latest figures from the EB
registry affects less than 10,000 children and adults in the
United States. Most of these patients suffer from the simplex form of
EB, about 600 have the Junctional form, 600 have Recessive
Dystrophic, 840 with Dominant Dystrophic and 320 with some unclassified form of
EB.
People born with EB lack anchors that hold the layers of their
skin together. As a consequence, any activity that rubs or causes
pressure produces a painful sore akin to a second-degree burn in
patients with the Recessive Dystrophic form. While many forms of
EB are mild, some are not. One form of EB is lethal in the first
weeks or months of life. Some are mutilating over time. Infection
is a serious, ongoing concern. As if the diagnosis is not
heartbreaking enough, no treatment for EB has been effective.
Parents have coped by protecting the child's skin with gauze
and ointments to prevent and protect the wounds and healthy
skin-something that HMOs refuse to pay for and can cost a
family up to several thousand dollars a month.
The saddest part is that EB
is so rare that most doctors and nurses can work a lifetime and never bump
into this condition, hence they are at a loss on how to help an EB child
without finding the very few doctors that are knowledgeable.
EB is
currently an incurable condition with no effective
treatment.
"I don't know
of any disease that children face that causes such long term suffering.
You know, you have children that have things that take their lives, but,
this disease, they suffer emotionally and physically for a long long time
before they either die or... well, and actually in the severe forms that's
what happens. "
The following is what it's
like to be diagnosed with one of the more severe forms:
Imagine...
a child with painful
wounds similar to burns covering most of his or her body.
having to wrap each tiny little infant finger with Vaseline gauze and then cover it with gauze to prevent the hand from scarring, webbing and contracting.
never being able to hold your child tight because if you did, their skin would blister or shear off.
a child who will never know what it's like to run, skip or jump, or to play games with other children because even the slightest physical contact will injure his or her skin.
a child who screams out each time it is bathed because the water touching its open wounds creates incredible pain.
a diet of only liquids or soft foods because blistering and scarring occur in the esophagus.
an active baby with his knees soaked in blood from the normal act of crawling.
a teenager with stumps for hands, the affected fingers scarred/healed together.
Become EB Awareness' friend on MYSPACE! Get all the news from
the world of EB by subscribing to the BLOG! http://www.myspace.com/ebawareness
Looking for EB Families in YOUR
area? Join the EB Database!
Hundreds of members have already
signed up from all over the world, categorized in order of location
and form of EB! Listing of LOCAL US Support groups
available HERE
HELP THIS WEBSITE
BY MAKING A DONATION TODAY!! This
website is supported by donations from our visitors. If you have
found this website interesting and informative, please help us
continue the development with a small donation by clicking on the
link below. Even just a $1 goes a long way to help me pay for the
the server and domain name (a cost of about $120 a year) and help
with the upkeep.
Our Second Shop has a
few different 'sayings'... such as "I am one in a Million,
Please Support Awareness
for Epidermolysis Bullosa" or "Someone I love has EB:
Epidermolysis Bullosa" and more, like this cap you see here
on the right...
http://www.cafepress.com/EBworld2
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with the upkeep.
Thank you for your
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Add yourself to the EB friends
& families map!
Like a
butterfly, a person
with EB is Fragile, Unique
May need the protection of a cocoon,
But may learn to fly with proper care and
treatment... ~Kariog
Heidi
Featured Book
Jonny Kennedy (Paperback) The
Story of the Boy Whose Skin Fell Off by Roger Stutter (Author), Nell McAndrew (Foreword)
Jonny Kennedy was the star of the
unforgettable Emmy award-winning documentary The Boy Whose
Skin Fell
Off. He was an extraordinary character determined
to live an ordinary life despite being born with the agonising condition
Recessive Dystrophic Epidermolysis Bullosa (EB), which meant that his skin could
literally fall off at the slightest touch. It was a
daily struggle he faced with courage, determination and wit,
offering inspiration to millions around the world. Tragically, Jonny was
just 36 when he lost a final battle to
skin cancer. This is his moving, honest and uplifting story. 'I
feel very fortunate to have met such a special person and
I will never forget him.' - Nell McAndrew
About the
Author
Roger Stutter was one of Jonny
Kennedy's closest friends, and spent many months recording Jonny's
innermost thoughts and recollections for this extraordinary memoir. Additional memories
are provided by Edna Kennedy, Jonny's mum, and Nell
McAndrew, who befriended Jonny in the final months before his death.
It is hoped the book will raise awareness for Jonny's condition
and for the charities that continue his work.
Click
Here for more great inspirational and helpful
books
Click
Here
for
books/videos to help grieving
parents/siblings
