EB Awareness and News
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.
Members
Links
CLICK HERE fo a COMPLETE listing.
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
Like this EB Awareness Dolly? There are TONS more HERE ready to be adopted!
Music
Videos
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EB Awareness Video
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My Flesh & Blood 1/8
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Wounds that need help to Heal
Added by Silvia
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Garrett: The Bondage of Bandages
Added by Silvia
Books about EB
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
EB Awareness Desktop Wallpapers
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)
Photos
Subscribe to the EB News posted below!
Forum
Need good advice. 2 Replies
Guys, advice too me, maybe from your practice, what you use when the mouth mucous is torn. My child cannot eat.....
Started by Irina. Last reply by Irina 14 hours ago.
G-tube or no G-Tube? 11 Replies
My nephew, Jayden, turned 3 weeks old yesterday, and has been diagnosed with JHEB. He's currently in the hospital again, on Morphne every 6 hours and and Tylenol every 4 hours for pain. The last se...
Started by Rachael. Last reply by Katie Kacmarsky 1 day ago.
Llangefni dad runs for brave Tie
Llangefni dad runs for brave Tie North Wales Chronicle - Bangor,UK http://www.northwaleschronicle.co.uk/new Davey's two-year-old son Tie has a condition called epidermolysis bullosa (EB) which caus...
Started by Silvia Jun 28.
Charity Event: A Night Under the Lasers with Zeppelin | Paisley ...
Charity Event: A Night Under the Lasers with Zeppelin | Paisley ... By s http://www.paisleypetunia.com/blog/?p=2067 And best of all this fun night out has a very affordable ticket price ($25) and 1...
Started by Silvia Jun 20.
Bill requiring insurance coverage for skin wound care signed
Bill requiring insurance coverage for skin wound care signed Stamford Plus Magazine - Stamford,CT,USA http://www.stamfordplus.com/stm/in to the Dystrophic Epidermolysis Bullosa Research Association...
Started by Silvia Jun 20.
Homeopathy helps to cure a rare disorder in a child
Homeopathy helps to cure a rare disorder in a child Webnewswire.com - New Delhi,India http://www.webnewswire.com/node/459039 Epidermolysis Bullosa Disease (EB) is a very rare disorder caused ... Of...
Started by Silvia Jun 20.
National Rehab June News Letter
For those who haven't seen the newsletter yet!
Started by Sara Denslaw Jun 17.
OK! Interview: Brooke Shields
OK! Interview: Brooke Shields OK! Magazine - New York,NY,USA http://www.okmagazine.com/news/view/14 also know a mom who has a little boy who has EB [Epidermolysis Bullosa], so it then sort of made ...
Started by Silvia Jun 14.
Marathons in all 7 continents of the world
Marathons in all 7 continents of the world Get Bracknell - Bracknell,Berkshire,UK http://www.getbracknell.co. supports people living with epidermolysis bullosa (EB), a rare skin condition which can...
Started by Silvia Jun 6.
Denbigh youngster's battle with rare skin disease
Denbigh youngster's battle with rare skin disease Daily Post - Llandudno Junction,UK http://www.dailypost.co.uk/news/north- birth, the plucky youngster from Denbigh has battled with rare disease Dy...
Started by Silvia May 30.
Blog Posts
Are they crazy??
Sent: Monday, March 23, 2009 12:59 PM
To: tigress@aptalaska.net
Subject: EB
Dear Dezra,
I am the Administrative Nurse Coordinator here at the University of Minnesota Blood and Marrow Transplant Program, and I have been forwarded your email inquiry regarding Epidermylosis Bullosa. We currently do have an open protocol for patients with EB, but they must have documented Recessive Dystrophic Epidermylosis Bullosa (RDEB), as well as documen… Continue
Posted by Dezra & Dalton Sky on June 29, 2009 at 8:52am
Product Testing (Pressure Relief Overlay)
My name is Martin Graham and I would like to know if anyone is interested in trying out one of our pediatric pressure-relief bed overlays? I have a company called QBiMed and we specialize in pressure relief products from Shear Comfort. These products have FDA approval for Stage 1 pressure sore prevention and I would like to see if they would be useful for patients with EB. We can provide you with a bed overlay to try out at no charge. We would just like to get your feedback on the pro… Continue
Posted by Martin Graham on June 19, 2009 at 5:28am
Hi Sara. We don't know what sub-type Emily has. The genetisists don't seem to know either. They foun…
I am glad to here you are both doing well. It is nice to communicate with some one who is familiar.
We are still worried for Emily. She hasn't started crawling or walking yet. We don't know what is going to… Continue
Posted by Raymond Storey on March 28, 2009 at 2:33am — 1 Comment
Stanford EB Research Update
We are looking for subjects who meet the following criteria:
1- Have a clinical diagnosis of RDEB by a local dermatologist
2- Are 18 years of age or more and are willing to give consent. Estimated to have at least 100 to 200 cm2 areas of open erosions on the trunk or extremities
3- Are able to undergo adequate anesthesia to al… Continue
Posted by Dezra & Dalton Sky on January 25, 2009 at 1:59pm — 1 Comment
~*Elder's Meditation of the Day*~
--Village Wise Man, SIOUX
The Elder's say the Native American women will lead the healing among the tribes. We need to especially p… Continue
Posted by Dezra & Dalton Sky on October 19, 2008 at 9:30pm
National Rehab is a proud sponsor of the EB community
Add Yourself to the EB Awareness MAP!
Sign the Wound Care Bill Petition and write to your Representative!!
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!
Terms Of Service
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.
Any post or thread that follows into this category will be promptly deleted.
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.
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Rewarding their best (Laguna Beach Coastline Pilot)
The Exchange Club of Laguna Beach honored the best of the best in the Laguna Beach Police Department at a special breakfast May 14 at Tivoli Terrace.Former Westmont resident garners Silver Knight Award (The Tribune-Democrat)
Megan Elizabeth Barron, formerly of Westmont, has received the Silver Knight Award in General Scholarship from The Miami Herald. She is a 2009 graduate of Coral Springs (Fla.) High School, where she was salutatorian.Alice + Olivia family picnic at Malibu Lumber Yard (Los Angeles Times)
Tory Burch and Intermix will also participate in the event, which will include complimentary lunch boxes. Ten percent of the proceeds of sales benefit medical research. Today, Alice + Olivia kicks off summer by hosting a surfside family picnic at the Malibu Lumber Yard, and neighbors Tory Burch and Intermix are chipping in on the festivities offering kid face-painting, balloon art and jewelry ...Fashion Forward: Beyonce looks dashing in 'Clara' dress (USA Today)
This week: At the airport with Beyonce, stylishly, and new designs online.© 2009 Created by Silvia on Ning. Create Your Own Social Network
