Epidermolysis Bullosa Info & Awareness
A super-friend from India, who is a graphic designer and an amazing helping hand for many charities, took the time to do quite a few EB Awareness Tags for this website. I’ve posted quite a few on our Facebook page, and I am now posting them on this blog a few at a time as…
My son Nicky was merely a week old when a good friend, researching the condition, told me emphatically that EB was definitely a Disorder, not a Disease. It may come to a surprise to many when my inner response to that was like ‘whatever’. “Thank You” I replied to her, and never thought about it…
The other day I was perusing the ‘EB news’ of the day and I ran across an article of a family whose insurance did not pay for bandages (shocking, I know!) and the family resorted to get their supplies from a state program for children with disabilities which picks up expenses, usually outrageous, when the…
When my son was born and later diagnosed with Recessive Dystrophic EB I thought the only difference with him and the other patients was the degree of severity. Actually, I take that back. I did not know there was a degree of severity either, I thought that, like most diagnoses I had known in the…
May the New Year bring these Wishes to you all… Warmth of love, comfort of home Joy from your children Company and support of family & friends A caring heart that accepts & treats all human beings equally Enrichment of knowledge and richness of diversity Courage to seek & speak the truth even if it…
I wanted to take a moment and wish everyone HAPPY HOLIDAYS, and as a good catholic, MERRY CHRISTMAS! BUON NATALE of, course to my Italian family and friends. I’ve been a bit MIA on this blog, my apologies. I’ve been busy finishing up my book about the story of my precious son I lost due…
By Silvia Corradin From the Book ‘Special Mommy Chronicles‘ (only $2.99 for the Kindle!) Being Different On most days the furthest thing from my mind is my child being different from any other. We laugh, play together, even bandage changes are so routine it feels like a ‘normal’ thing to do. I don’t have…
What do you do when your child with EB becomes a teenager with EB and starts asking you the really hard questions about life? When my son was small I could gloss over the answers with a positive saying or a humorous comment. Not so as he becomes a young man and wants real answers…
As I sit down to write this, the Turkey is already in the oven. Whether you are entertaining in your own home or being someone else’s guest, remember to have a heart full of gratitude. That is of course the essence of this holiday. I urge you all to take a few minutes to create a…
Many patients with EB have Facebook pages to gather support, prayers and to share their struggles and achievements. My son does as well. I didn’t make it, a dear photographer friend, who is documenting his life, made it for us. I scoured Facebook for other pages and this is the list I came up with.…
