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)

You will get an update weekly of everything posted in the FORUM below!

Enter your Email




Preview | Powered by FeedBlitz

HELP US MAKE A REAL POSITIVE CHANGE FOR EB FAMILIES!

STEP 1 : SIGN THE PETITION

Every American should be able to participate in impartial health care coverage, regardless of their disease. The public and our legislators must understand the impact of this disease on EB patients and their families, and the inequity that subsists in today’s health care system.

Please send the link to this petition to anyone you know!
http://www.ebanusa.org/petition.htm

STEP 2 : WRITE TO YOUR LEGISLATOR!!

We need help in getting sponsors and support for this Bill! If you would like to help us, please write to your legislator.

LINKS to find your legislators and SAMPLE LETTERS you can use to write and here's a copy of the WOUND CARE BILL you may send along with it are available on the website at:
http://www.ebanusa.org/petition.htm

THANK YOU SO MUCH!

EB News and Awareness has very few rules. We feel that as mothers and adults, holding someones hand is not necessary, so the rules are basic.
1.Slurs, fights, bad mouthing, lying of any nature shall not be tolerated on this site.
2. Be respectful of others, other's children and significant others.
3. Do not stalk, harass, or threaten another EBnews member.
DISCLAIMER
This website is intended to provide basic information about Epidermolysis Bullosa. EB Info World mostly includes Memorials, Photos of Children with EB, Personal Stories and EB Awareness gear and graphics. Descriptions of the various forms of EB were taken from various DebRA websites around the world and statistics were taken from the book by Dr. Fine. Everything is as accurate as possible. Various Bandaging Instructions and Tips are from parents and patients and are not intended to, nor do they, constitute medical or other advice. Readers are warned not to take any action with regard to medical treatment or otherwise, based on the information on this web site without first consulting a physician. EB Info World does not promote or recommend any treatment, therapy, institution or health care plan. The information contained in this site is intended to be for your general education and information only and not for use in pursuing any treatment or course of action. Ultimately, the course of action in treating a given patient must be individualized after a thorough discussion with the patient's physician(s). EB Info World may provide links to other individuals and organizations as a service to our visitors; EB Info World is not responsible for the information provided in other web sites we may link to or user comments by individuals participating in our List Serve, stories submitted to this site or this site's message forum.