EB Awareness

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.

Links

This group supports ALL EB Organizations in the US and around the World.
CLICK HERE fo a COMPLETE listing.

EB families in your area

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





Like this EB Awareness Dolly? There are TONS more HERE ready to be adopted!

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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

Get your EB Awareness Desktop Wallpapers 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)

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Silvia

Hempfield girl growing stronger since stem cell transplant

Hempfield girl growing stronger since stem cell transplant - Pittsburgh Tribune-Review www.pittsburghlive.com http://www.p continues to wear bandages on her arms, hands, legs and feet. But she's less…

Started by Silvia Jan 2.

Silvia

Scheme to help 'cotton wool kids'

Scheme to help 'cotton wool kids' The Australian http://www.theaustralian.com.au/news/na is one of Australia's "cotton wool kids", so named because the genetic condition that afflicts them, called ep…

Started by Silvia Jan 2.

Silvia

LOCAL charity fundraiser and dancing school principal Robina ...

LOCAL charity fundraiser and dancing school principal Robina ... Montrose Today - Montrose,Scotland,UK http://www.montrosereview.co. known as the butterfly girl and who died last year, suffered from…

Started by Silvia Dec. 14, 2009.

Silvia

$17000 donated at Fallbrook event for five-year old Temecula girl

$17000 donated at Fallbrook event for five-year old Temecula girl Village News Network http://www.thevillagenews.com/story/42525/ with a rare genetic disorder called Epidermolysis Bullosa (EB), any a…

Started by Silvia Dec. 14, 2009.

Silvia

Where to get info about Marybeth & Samantha

Marybeth and her daughter Samantha were recently featured on the Discovery Health Channel show called "Truth Be Told - I Have A Child With Special Needs". You can follow Samantha Sheridan's Bone Mar…

Started by Silvia Dec. 6, 2009.

Silvia

Stem Cells Could Offer New Source for Skin Grafts

Stem Cells Could Offer New Source for Skin Grafts Scientific American - NYC,New York,USA http://www.scientificamerican.com/blog/po researchers add that these skin cells could eventually also help peo…

Started by Silvia Dec. 6, 2009.

Silvia

People with severe EBS at increased risk of skin cancer, say scientists

People with severe EBS at increased risk of skin cancer, say scientists News-Medical-Net Tue, 24 Nov 2009 22:25 PM PST http://www.news-medical.net/news/20091125/Peop scientists have discovered the li…

Started by Silvia Dec. 6, 2009.

Silvia

Tynan meets Olympic champ Ronnie at 'Jingle Run' launch

Tynan meets Olympic champ Ronnie at 'Jingle Run' launch http://www.wicklowpeople.ie/local-notes/tyn People - Wicklow,Ireland Tynan was born with the genetic skin condition epidermolysis bullosa (EB).…

Started by Silvia Dec. 6, 2009.

Silvia

TV ALERT!!!!

TV ALERT!!!! The Discovery Health Channel will be showing a show called "Truth Be Told - I Have A Child With Special Needs" on WED December 2nd. One of the families is Marybeth and her daughter Saman…

Started by Silvia Dec. 1, 2009.

Silvia

Butterfly child

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. Jenn…

Started by Silvia Nov. 15, 2009.

Blog Posts

Leslie Rose

The BEST Treatments for EB - 46 years of learning

I have a friend that was born as a twin. He was born with EB...his sister was not.

After years of different treatments...seeing doctors all over the world...and even doctors studying him...
we have found the best ways to treat this skin condition. He has the worst case. He does not have finger nails nor toe nails.

Now 46 years with this skin condition he knows more than the doctors do.

The ocean and sun are the best treatments around. The ocean has nutrients and natural healing salt. The sun… Continue

Posted by Leslie Rose on November 29, 2009 at 10:05pm

Sara Denslaw

Update on the Bone Marrow Transplant Clinical Trials in Minn.

The following was posted on the caringbridge page for the current patient undergoing the transplant: (yes I take it to mean they have expanded it to Junctional EB but you'd have to call for sure)


Stem Cell Therapy for Severe Forms of Epidermolysis Bullosa


CLINICAL TRIAL

This is a single institution trial to determine the effectiveness of stem cells from closely matched related and unrelated donors to replace missing or defective proteins responsible for severe forms of epidermolysis bullosa… Continue

Posted by Sara Denslaw on September 2, 2009 at 12:06pm

Rachael

Like a comet, blazing 'cross the evening sky....gone too soon!


Jayden Christopher Ivey 6/7/09 - 7/5/09
28 days is NOT enough....


It was my great joy to have been able to spend quite a lot of time with Jayden during his too short life of 28 days. Although he wasn't really much of a conversationalist (he was kinda more the strong, quiet type) he wa… Continue

Posted by Rachael on July 9, 2009 at 8:00am — 3 Comments

Dezra & Dalton Sky

Are they crazy??

From: Krepski, Timothy P [mailto:TKREPSK1@fairview.org]
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 — 2 Comments

Martin Graham

Product Testing (Pressure Relief Overlay)

Hello,

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

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!!

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!

Terms Of Service

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.

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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EB News Feed

Seriously ill patients hit by rising medical costs (Brisbane Times)

CHRONICALLY ILL patients face costs for medical items such as wound dressing and oxygen supplies running into hundreds of dollars a week because of the growth in out-of-hospital care not covered by Medicare.

Poor miss out on medical items (The Age)

Chronically ill patients face out-of-pocket costs of hundreds of thousands of dollars a year for essential medical items because of the growth in out-of-hospital care not covered by Medicare.

Parents appeal to support runner (Rutland & Stamford Mercury)

THE parents of baby girl born with a rare skin disease are supporting a runner's bid to raise more than £26,000 for charity.

RTI Biologics Donates Matrix HD™ To Treat Young Child With Rare Genetic Skin Condition (Medical News Today)

RTI Biologics Inc. (RTI) (Nasdaq:RTIX), the Florida-based processor of orthopedic, dental, hernia and other biologic implants, has donated a sterilized dermis allograft, Matrix HD™, to treat an eight-year old patient with a rare skin disease called recessive dystrophic epidermolysis bullosa (EB). This is the first time terminally sterilized allograft dermis will be used to treat this disease ...

RTI Biologics Donates Matrix HD to Treat Young Child with Rare Genetic Skin Condition (Business Wire via Yahoo! Finance)

ALACHUA, Fla.----RTI Biologics Inc. , the Florida-based processor of orthopedic, dental, hernia and other biologic implants, has donated a sterilized dermis allograft, Matrix HD™, to treat an eight-year old patient with a rare skin disease called recessive dystrophic epidermolysis bullosa .

Marathon runner's £26,385 target (Yorkshire Post Today)

An East Yorkshire businesswoman has set herself the target of raising more than £26,000 for a charity which helps sufferers of a rare skin disease. (25/01/2010 12:46:10)

Country School plunges for a cause (New Canaan Advertiser)

On a frigid New Year’s Day, a record 28 people jumped into the 39 degree waters of Long Island Sound to raise money for the Epidermolysis Bullosa (EB) Center at Cincinnati Children’s Hospital.

Famous four will inspire Furness Academy students (North-West Evening Mail)

THE pupils of a secondary school have renamed its houses after inspirational people.

Patient Advocates Cite Insurance Caps as Critical Difference in Senate and House Health Care Reform (PR Newswire via Yahoo! News)

Advocacy groups warn that Senate version of bill would not eliminate caps for millions of Americans

Bert's big adventure (Cherokee Tribune)

Thanks to a generous radio personality, two Cherokee County children will take a trip next month that many their age dream of their entire childhood. Madison Shipley, 5, daughter of Jessica Montou...
 

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