Are you strong enough to be me? I have EB.

Tuesday, March 16, 2010

Video from EB Medical Research Foundation

Posted by Allison Diaz at 5:34 PM 1 comment:
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Labels: EB Video from EBMRF Web Site - Check it out
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EB - links

  • EB HELP
  • EBRP
  • What is EB
  • Donate for Cure
  • University of Minnesota - Clinical trial
  • Stanford research update

Learn more - Children with EB

  • Anthea Turner -DebRA Awareness Video
  • Support Baby Easton Fiedel
  • Fallyn's Story

What is EB?

WHAT IS EB?
Epidermolysis Bullosa is a painful, life threatening disease of the skin. Our son Samuel has the Recessive Dystrophic form (RDEB). In his case the bottom layer of his skin does not adhere properly to the other layers because the collagen 7 protein involved in this function is either missing or mis-shapen.
Because of this genetic defect even slight friction can cause several layers of skin to rip away creating horrific, painful wounds. Normal daily activities can cause blistering or tearing of the skin. Currently there is no cure for EB, only wound management as treatment. Despite the challenges Sam faces with EB, he displays amazing strength every day and inspires those around him.

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