The EB Awareness and News group keeps members informed on the latest happenings in the world of EB. This group supports ALL EB Organizations Worldwide.




Added by Silvia
Added by Silvia
Added by Silvia
Added by Silvia

Living with Epidermolysis Bullosa
by Silvia C. & Brenda G.
For a COMPLETE listing of books related to EB or geared toward helping Special Need Families, CLICK HERE

Welcome to the EB Awareness and News group, founded on 2/4/2008. Sister groups are available on MYSPACE, FACEBOOK, YAHOO, CAFEMOM and more at the following URLS: http://www.myspace.com/ebawareness http://groups.myspace.com/ebworld
http://www.facebook.com/group.php?gid=16884589256
http://www.cafemom.com/group/6629
http://health.groups.yahoo.com/group/ebnews/
The MAIN Newslist is here:
http://lists.ebinfoworld.com/admindb.cgi/ebnews-ebinfoworld.com
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.
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.
EB is currently an incurable condition with no effective treatment.
For more information about Epidermolysis Bullosa, please visit EB Info World

"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. "
Lynn Anderson (President of the EBMRF)
Butterfly child Sheboygan Press - Sheboygan,WI,USA http://www.sheboyganpress.com/art has epidermolysis bullosa, a rare skin condition that causes her skin to blister with the slightest friction. Je...
Started by Silvia Nov 15.
Brave Tie fronts national campaign to beat fatal skin condition Daily Post - Llandudno Junction,UK http://www.dailypost.co.uk/news/north- a cure is found for Epidermolysis Bullosa (EB) his conditio...
Started by Silvia Nov 15.
Lachlan's life of pain Brisbane Times - Brisbane,Queensland,Australia http://www.brisbanet them the sad news - their son was suffering from the painful and debilitating genetic disease, Epidermolys...
Started by Silvia Nov 15.
Kids who cant even be hugged | Genetic disease | epidermolysis ... http://www.essentialbaby.com.au/parenting/edit who can't even be hugged | Genetic disease | epidermolysis bullosa (EB) ... The Nat...
Started by Silvia Nov 15.
Courteney Cox and David Arquette Expand Their Charity Jewelry ... By Andrea http://stylenews.peoplestylewatch.com/2009/ the launch of their EB jewelry collection, the Arquettes and Satya Jewelry ha...
Started by Silvia Nov 15.
Holding out hope for a cure Gustine Press-Standard - Newman,CA,USA http://westsideconnect.com/content/v of the severity of the disease – Epidermolysis Bullosa, or EB – Garrett requires extensive ba...
Started by Silvia Nov 15.
Paper: Epidermolysis bullosa in calves in the UK Vetsweb - Doetinchem,Netherlands http://www.vetsweb.com/news from various parts of the UK published a short paper about eight cases of Epidermolysis...
Started by Silvia Nov 15.
Kansas girl has big idea to help brothers Belleville News Democrat - Belleville,IL,USA http://www.bnd.com/336/story/100 brothers suffer from a form of dystrophic epidermolysis bullosa, a rare genet...
Started by Silvia Nov 15.
11-year-old to throw out first pitch http://www.9news.com/news/article.aspx?story - Denver,CO,USA She was born with a rare genetic skin disease called EB, which stands for Epidermolysis Bullosa. "S...
Started by Silvia Oct 11.
I just attanded SAWC, and had a chance to talk with DEBRA association, the results are great. This gel really helps. www.woundbegone.com
Started by Maggie Jankowski Sep 22.
Posted by Sara Denslaw on September 2, 2009 at 12:06pm

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