Category Archives: Articles

Every EB patient is different… no, really!

0 Comment

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…

Read More

What Do You Do?

0 Comment

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…

Read More

A Journey Into Motherhood

0 Comment

From the book “Living with Epidermolysis Bullosa” (ONLY $2.99 for the Kindle!) This story was written in early 2007. Nicky is now nearly 16 (his birthday is in late November). Follow Nicky’s Caringbridge Blog at http://www.caringbridge.org/visit/nickyz (you need to log in to view it, but it’s free). A Journey Into Motherhood  By Silvia C. silviaskingdom.com California, USA…

Read More

How to find Individual State Programs

0 Comment

These programs help low-income families (usually) or/and children with special needs. When you click on the link for YOUR State’s Department of Public Health, search for (if it’s not immediately evident) ‘Children Health’ or ‘Children Medical’ services. If the NAME of the State Program and information it is known, that information will be below the…

Read More

A Bandage Tale

0 Comment

It seems as if all people see, when they come in contact with a child with EB, is gauze. Some wonder if the patient has been into an accident or a fire, others fear it’s contagious: “what happened?” is a common question tossed around, but most just look dumbfounded, not being able to formulate a thought…

Read More

Baby on Board

0 Comment

By Emily Spurrier From her Blog: Dys-Located This is the sixth and final entry in a blog series on Epidermolysis Bullosa (EB) as part of EB Awareness Week (October 25-31). *************************** Earlier in life, I had envisioned myself having three children. I always said that the first would be a boy, the second, a girl… and the third…

Read More

Further Into Adulthood

0 Comment

By Emily Spurrier From her Blog: Dys-Located This is the fifth in a blog series on Epidermolysis Bullosa (EB) as part of EB Awareness Week (October 25-31). *************************** Following the demise of my first serious relationship, I figured honesty was still the best policy with those I had dated. With the first potentiality, however, intimacy was not an…

Read More

Into Adulthood

0 Comment

By Emily Spurrier From her Blog: Dys-Located This is the fourth in a blog series on Epidermolysis Bullosa (EB) as part of EB Awareness Week (October 25-31). *************************** By the time I was fourteen, I was able to walk long distances, but could not do so in shoes. I was in an adapted physical education…

Read More

Gabriel’s Story

0 Comment

When we found out we were pregnant we were so excited, we had been trying for 6 months. After a typical 9 months of a perfectly normal pregnancy, I gave birth to a beautiful 7lb baby boy which we named Gabriel, after the Angel in God’s Army. Little did we know  what a soldier we…

Read More