Epidermolysis Bullosa Quotes

With Nicky's form of EB, once an area gets over-wounded it never gets strong again. Some areas do not even heal ever again. These areas now included his feet. Even when they did heal, they were so incredibly fragile that even a simple step or a little pressure to get himself off the computer chair to the bed would cause a blister the size of my fist. ~ Silvia Corradin

This entire ordeal taught me a valuable lesson. People are important-not things. I was no longer keeping up with the Joneses, material things or lots of money; that mattered very little to me. Life isn't about having, is about being. ~ Silvia Corradin

There was no cure for Recessive Dystrophic Epidermolysis Bullosa, there was also no known treatment, and no drug that improved the condition, not even an injection or medication to give him weekly or daily that would ease the symptoms. Absolutely nothing, zero, zilch. ~ Silvia Corradin

I was very upset at how his skin was peeling off so badly anywhere, but nobody gave it a second thought. They told me it was 'normal'.
Of course this was far from normal. There was no way they could have known about EB (Epidermolysis Bullosa) back then considering the rarity of the disorder. The only way to diagnose EB it is through a skin biopsy, and they would need to suspect EB to send it to the correct lab. It would not be until Nicky was born 21 months later that every Doctor imaginable was all of a sudden extremely interested in seeing photos of Alex. "Oh yeah" the dermatologist that diagnosed Nicky and Doctor McGuire at Stanford said to me unequivocally, "Alex for sure had EB." How EB could have caused his demise though is still a mystery. Doctor Marinkovich at Stanford told me that many babies with EB are indeed stillborn, but could not tell me why. At this point however, in the delivery room, we were completely oblivious about EB and would remain so for nearly two years ~ Silvia Corradin

His itching caused ninety percent of his wounds; hence to us it was vital to overwrap to create that very important padding to prevent him from hurting himself. ~ Silvia Corradin

My role as an advocate for Epidermolysis Bullosa related issues, my key responsibility, were to inform, educate, and promote understanding of what we go through as individuals and as a community. ~ Silvia Corradin

The bottom line is that there are very few families who have a family member with a catastrophic medical condition such as RDEB that can survive financially without help. ~ Silvia Corradin

For a long time I told myself that things would get easier. It was going to be easier once he sat up, or when he was out of diapers, or when he turned 10, but I had been duped. The wounds were bigger, nastier, took longer to heal; the limbs were longer, we needed more bandages, longer wound care, hands worse, more homework, and things were only going to get tougher. ~ Silvia Corradin

Nicky's condition is called "Epidermolysis Bullosa", he has the Recessive Dystrophic form. This is a long fancy name for a condition of the skin where a certain protein called "collagen", which acts as a glue between the epidermis and the dermis, is missing or the body simply does not produce enough of it. Because the skin is missing this protein, blisters develop easily. This can occur after a slight bump of the skin or scratch, anywhere on his body, including his mouth and esophagus. Many of these blisters are painful, and will heal with scars. The scars cause deformities of the extremities, which lead to disability. Nicky always wears bandages to protect the healthy skin and allow healing of wounded skin. This condition is NOT contagious. ~ Silvia Corradin

I accepted the child, but I did not accept this monster called Epidermolysis Bullosa, and I would move heaven and earth in order to effect change. ~ Silvia Corradin