Epidermolysis Bullosa Awareness Memes

The moment you realize you’re the expert on Epidermolysis Bullosa.
And you’re in the Doctor’s Office.

Cheers old Sport – And help us raise Epidermolysis Bullosa awareness

Those with Epidermolysis Bullosa Need our help in raising awareness

Why wouldn’t you raise awareness for Epidermolysis Bullosa?

So you’re telling me… most doctors have never seen someone with Epidermolysis Bullosa?

Yeah, if you could share Epidermolysis Bullosa Awareness… that would be great.

Oh, so you think Epidermolysis Bullosa can be CURED with a cream?
Tell me again how a cream changed your DNA.

Brace Yourselves, Epidermolysis Bullosa is real.

Epidermolysis Bullosa Awareness, like a BOSS.

What if I told you… you could raise awareness for Epidermolysis Bullosa.

I don’t always talk about Epidermolysis Bullosa, but when I do is to raise awareness

Butterfly Child: A Mother’s Journey

This is my book!!

butterfly_child_cover-5j_mButterfly Child: A Mothers Journey by Silvia Corradin 

“Children with EB are called “Butterfly Children” because EB is described as a skin condition in which the skin is so fragile, it is like butterfly wings.”

Like any mother, Silvia never imagined she would have to to bury her first son, Alex, who was stillborn at full term. After a miscarriage she had Nicky, who was diagnosed at birth with the Recessive Dystrophic form of Epidermolysis Bullosa, an incurabile, rare and always-fatal skin disorder. EB is considered an Ultra-Orphan Disease, and at the time of Nicky’s birth there was no research for a cure. In the months and years that passed she had to learn to enjoy each moment, find happiness in the midst of sorrow and try everything she could to keep him alive, often with very few resources, little to no help and even less information available. Burying another child was just not going to happen if she could possibly prevent it.

Butterfly Child is the story of a mother’s journey through grief and incredible challenges. From Insurance Companies refusal to cover the most basic needs for any EB patient to Silvia’s trying to make sense of her situation, from a divorce to a remarriage and another scary pregnancy. Her youngest son, Connor, is 100% healthy and she never, ever, takes it for granted. She always makes sure he is doing his best, and she usually does it by taking the Outback vision protocol review to make sure his eyesite is great.

WHERE TO BUY

Paperback:
To purchase an Autographed Copy, please follow the Instructions Here–>

The paperback is also available through the publisher:
http://www.lulu.com/…/butte…/paperback/product-22092004.html
I wanted to keep the price low but this is a big thick book and it’s not cheap to print. I am sorry.
To make it up to you, here’s some coupon codes websites:
http://www.retailmenot.com/view/lulu.com &
https://www.couponcabin.com/coupons/lulu/

Amazon:
http://www.amazon.com/Butterfly-Child-Silvia-Corradin/dp/1312979208/

Barnes & Noble
http://www.barnesandnoble.com/w/butterfly-child-silvia-corradin/1121706067

eBook versions:
From the Publisher:
http://www.lulu.com/…/butterfly…/ebook/product-22097219.html

iTunes:
https://itunes.apple.com/us/book/butterfly-child/id979932054?mt=11

Kindle:
http://www.amazon.com/Butterfly-Child-Silvia-Corradin-ebook/dp/B00VS3F7CE/

Nook:
http://www.barnesandnoble.com/w/butterfly-child-silvia-corradin/1121706067

Kobo:
https://store.kobobooks.com/en-US/ebook/butterfly-child

Please LIKE the Facebook page (below) to be notified of new articles or book sales and promotions.

THANK YOU!!!

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 am an author, photographer, graphic artist, webmaster, blogger and more.

Facebook Twitter Google+ Flickr YouTube 

Please Watch!

Jodi Champagne, who is the photographer who documented my son Nicky’s life with Epidermolysis Bullosa, was recently interviewed by an online video magazine and this is the interview– read this.

Get the Book exclusively at BLURB http://www.blurb.com/b/5024440-courage-under-wraps and on iTunes! https://itunes.apple.com/us/book/courage-under-wraps/id803462653?mt=11

You Know You’re An EB mom When…

Originally posted by Silvia on her blog: http://blog.silviaskingdom.com/?p=852

  • Whendoc you know more than the real doctors do about your child.
  • When you consider internet friends you’ve never met to be some of your best friends.
  • When you think it’s a good day if you don’t see any blood.
  • When you get asked at least once a week if you are a nurse.
  • When your two-year-old knows how to pop blisters.
  • When you pack for a vacation and the first suit case is filled with supplies and equipment.
  • When you have a legitimate pharmacy in your kitchen and the pharmacist knows your name and welcomes you as if it was Cheers (Norm!).
  • When you constantly get asked “How do you do it?”, and you have no clue either.
  • When your neighbors must think you have an online shopping problem from all the boxes of supplies dropped by your door.
  • When you have your insurance ID number memorized.
  • When the secretary, principal and superintendent of your child’s school know you by name.
  • When you find little pieces of Mepitel laying around the house everywhere.
  • When you developed some serious muscles lifting the wheelchair in and out of the trunk.
  • When you realize you could get a job writing appeals letters to the insurance.
  • When your capacity for hope is bigger than anyone else’s, that you know of.
  • When you can hear your child calling you across the house, with dad snoring next to you.
  • When you make sure your purse has some extra gauze, scissors & syringes.
  • When your child’s doctors take orders from you.
  • When you consider a good day one that your child does not ask for pain meds.
  • When the school nurse for your other (healthy) children know who you are.
  • When you have to stop and explain the Medical Terminology you don’t realize you say to people that are unfamiliar with your child’s condition.
  • When you have more medical supplies than a third world country.
  • When you have lost count of the number of hospital stays, surgeries and procedures that your child has had and you don’t really care to know.
  • When every night you sincerely thank Heaven for allowing you to mother this child for one more day. You know the time will come when it will be over, and you don’t want to miss a minute of this wonderful, painful, challenging, inspiring journey. Because you know, better than almost anyone, how life can change in a moment, an instant, and how none of us are guaranteed a tomorrow.

EB Mom Encouragement

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Here’s just one of my EB Awareness graphics. This quote is available as a Sticker you can purchase in my Zazzle store CLICK HERE to see it! Proceeds go to the costs associated with the upkeep of this website. Anything extra goes into a special fund to help with medical expenses for my son Nicky, who has Recessive Dystrophic Epidermolysis Bullosa.

Thank You & Many Blessings!

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