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EB Awareness

 admin
 March 2, 2017
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In loving memory of every EB patient who has lost their battle against EB and the ones who continue to conquer it!
Support Epidermolysis Bullosa Awareness

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  • Welcome to EB Info World
  • About EB & FAQ
    • Information about EB
    • About EB Simplex
    • About EB Junctional
    • About EB Dystrophic
    • Clinical Pictures
      • Simplex
      • Junctional
      • Dystrophic
    • Articles
      • Bandaging instructions
    • Disclaimer
  • EB Families Corner
    • Share Your Story!
    • Personal Stories
    • Food & Recipes
    • Hints & Tips
  • EB Patient’s Photos & Memorials
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This website proudly supports the work of the EBMRF. The EBMRF is unique in that the Foundation pays no salaries. While the foundation was founded to mainly support research at Stanford for a cure, they also help fund other research around the world.
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Living with Epidermolysis Bullosa


Living with Epidermolysis Bullosa
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Butterfly Child: A Mother’s Journey


Butterfly Child

Follow Silvia's journey from the stillbirth of her first son, followed by a miscarriage, and the first 18 years of her son Nicky's life with Recessive Dystrophic Epidermolysis Bullosa.

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This darling EB Boy, mascot of this website, was made for EB Info World by Kristina Wyatt of the EB Awareness website.
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About Me

My name is Silvia and while I was born and grew up in Italy, I now live in Southern California (USA). I am Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted.
I started this website when Nicky was just an infant because I could not find any information about EB, so anything I came across I posted for the benefit of other parents and it grew from there. I still run this website (and its FB page) because I never stopped looking for information!
For more about me, you may visit my personal blog. Thank You for visiting!

Recent Posts

  • Epidermolysis Bullosa Awareness Memes
  • Ian Ziering EB Awareness Quote
  • Eddie Vedder EB Quote
  • There is no Perfect Way to be an EB parent.
  • My Heart Belongs to My Child with EB
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  • Always Hope ~ Epidermolysis Bullosa Awareness
  • Keep Calm for EB Awareness
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  • My Child has Courage

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