EBAN Epidermolysis Bullosa 的照片

EBAN

www.myspace.com/ebanusa

is benefiting Camp Wonder!心情: 冒險 冒險 於 2009/4/22。 檢視更多

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  • EBAN Epidermolysis Bullosa

  • 102 / 女
  • Florida, US
  • 上次登入時間： 2009/10/23

158957381|102|11110|http://c2.ac-images.myspacecdn.com/images01/52/m_6fa0578d84e565b2c7bbaff4b9b725dd.jpg

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Epidermolysis Bullosa Patients have skin as fragile as a butterfly’s wing which can blister at the slightest touch — even from a mother’s cuddle. Normal day-to-day life can cause constant pain and scarring, which, in the worse forms, leads to eventual disfigurement, disability and often early death. EB is an inherited disease that affects less than 10,000 children and adults in the United States. According to the latest figures, most of these patients suffer from the simplex form of EB, about 600 have the Junctional form, 600 have RDEB, 840 with DDEB 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. One forms 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 HMO's refuse to pay for.
EBAN’s first and foremost goal is to improve the financial quality and emotional stability of EB families. We also wish to serve the EB community as legislative advocates, and revive imperative legislation – the Wound Care Bill.
HELP THE EB CHILDREN! Sign the petition for the Wound Care Bill TODAY! http://ebanusa.org/petition.htm


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我想認識：

WATCH THE BAY NEWS VIDEO ABOUT THE EBAN FUNDRAISER WITH CHICAGO CUBS MANAGER LOU PINIELLA THAT TOOK PLACE JANUARY 15, 2007! CLICK ON THE YOUTUBE VIDEOS BELOW:

PART 1

PART 2

留言

共 22 則留言，目前顯示 22 則
  • jen

    2009/11/22 06:43


    Check out my page
    http://www.doulike.us/photos/7129405.html?b=4&w=46



    Let me know if you like me YES or NO
    http://www.doulike.us/photos/7129405.html?b=4&w=46
  • Mr. P - But ya can call…Paul Lemos Martinez jr

    2009/9/23 13:09

    hi i thought i'd share my blog to you, it is about my life with eb and how i view life



    http://turningpain2success.blogspot.com/
  • Glenda

    2009/7/26 02:20

    This comment was sent by your friend via the Vegas app. To block this app and all communications from it, click Here.


    -------------------------------------------
    Hi, come join me in VEGAS. To get you started I have given you $200 from my own pocket :). (click on image below to teleport to vegas)

    ..

  • Vonny Cal

    2009/3/22 18:01

    Thank you EBAN, keep up the good work! love chad
  • Herpes and HPV DatingLove H Style

    2009/2/28 16:38

    MyHotComments.com
    MyHotComments Help Support Herpes and HPV Research.


    Best Regards
    Love, H Style
    www. lovehstyle. com
  • jen

    2009/2/7 02:06

    This comment was sent by your friend via the Cheers!! app.
    To block this app and all communications from it, click Here.


    -------------------------------------------
    Hey EBAN, I am sending you a Long Island Iced Tea.



    Send me a drink back!

  • jen

    2009/1/24 23:38

    This comment was sent by your friend via the what type of angel are you? app.
    To block this app and all communications from it, click Here.


    -------------------------------------------
    Hey I just took this awesome survey called what type of angel r u and you can too! Its simple and quick, and you can meet tons of people with similar (or the same!) answers.


    what type of angel r u



  • Teri BethTeri Wright

    2008/11/22 21:47

    This comment was sent by your friend via the Dog World app.
    To block this app and all communications from it, click Here.


    -------------------------------------------

    Hey EBAN,
    I left you a gift. Click and pick it up.

  • Teri BethTeri Wright

    2008/11/10 18:56

    This comment was sent by your friend via the Dog World app.
    To block this app and all communications from it, click Here.


    -------------------------------------------

    Hey EBAN,
    I left you a gift. Click and pick it up.

  • jen

    2008/8/19 03:46

    This comment was sent by your friend via the Super Pets app.
    To block this app and all communications from it, click Here.


    -------------------------------------------

    I'm jen's pet.
    Come play with me so I can earn money! Pet Me! Feed Me! Adopt Your Own!





    Find an easy movie date! | Hug me!

  • Polar Ice

    2008/7/9 04:33

    This comment was sent by your friend via the Mobsters app.


    To block this app and all communications from it, click Here.


    -------------------------------------------


    Todd wants you to join their mob in Mobsters, a Mafia-style combat game played on MySpace.


    Start out as a petty thief and work your way up to become a Mob Don!

    Join Todd's Mob!

  • JinX :╳

    2008/5/23 18:08

    Thanks for adding me and for creating this site.

    May God bless these people cause they are amazing!
  • Common Cause

    2008/4/22 18:17

  • Clew

    2008/4/3 18:05

    THANK YOU!!! For the add!

    xxooxxoo
  • Tera™

    2008/3/17 23:06

    This website inspires me everyday. Thank you.


    -Tera
  • Fundraising Walls - Mem…

    2008/2/29 22:22

    Effortless Fundraising At Memsaic. com

    Thanks for the add. I hope we can help you raise money and awareness for the causes that you care about.


    mark@memsaic.com
  • Tera™

    2007/12/29 23:43

    Thank you for the add. My baby sister died of EB when I was seven. She was the first case of EB to be seen at the hospital that she was born at. Very little was known about her condition at the time, but throughout the years new treatments have been discovered. I think about Leanne every day and I want to help all those who suffer from EB because it is what she would want me to do.


    I ♥ you Leanne Michelle.
  • Teri BethTeri Wright

    2007/11/2 06:06

  • ☆Cynthia☆

    2007/9/25 14:37

    Thank you for the add. I live with EB everyday. Every little bit of word about EB helps us out.

    God Bless,Cynthia =)
  • *~Miss Anonymous~*

    2007/8/30 00:53

    coming by to show love and say thanks for the add.


    much love
    xoxox
    ashleigh
  • Health Care For All – N…

    2007/6/13 19:19

    THANK YOU for being a friend to OneCareNow!   JOIN MICHAEL MOORE (see our link and info on SB 840 on his page!) and help us spread the word by forwarding our page and petition to others, subscribing and participating in our blog and putting us in your top friend list.


    Support this bill... even if you are from out of state... help us win it for California, and watch the movement spread.
      California can lead the way for America with TRUE Universal Health Coverage---not phony schemes that use public funding for private insurance companies to continue business as usual.
      Only SINGLE PAYER can cut costs and improve quality of care. And only a huge public outcry will make it happen.


    CLICK HERE TO SIGN THE PETITION!


    CLICK HERE TO DONATE!


    For all those in California who are reading this, we especially need your help.
    This is a true grassroots effort, folks!  Sign up now to be a part of the solution!

  • Dante's PeakDante Rochon

    2007/2/16 08:10

    Yahoo! fewiaijo