When it all started

As I told you in my last post, I have Recessive Dystrophic Epidermolysis Bullosa. It is hereditary and many people could be a carrier and not know. In my case my family has Dominant Dystropic EB, unbeknowst to anyone, my mother is an EB carrier - therefore I got the recessive type - which is much worse than the dominant type. Again - visit http://www.debra.org/ for more information.

so - let the story begin:

I was born on June 10th in Ohio. When I was born I had no skin on the inside of my left foot, no toenails and many blisters and sores.

Even though this disease is hereditary, I recently found out that my family didn't have a diagnosis for it until I was born. So, imagine their suprise when I came out the mess that I was. I have seen pictures of myself in an incubator and seen pictures with blisters on my face and I still have the scar on my foot as a reminder of how fragile I was when I was born.

My mother has told me stories about how difficult it was to care for me as a baby. If you picked me up under the arms I blistered where you touched me. She had to sew very soft pieces of fabric to the backs of the buttons and snaps on my baby clothes to keep them from rubbing blisters. Diaper changes were a challenge, etc. etc.

Now, being the mother of a 20 month old, I have a new appreciation for what my mother and father went through trying to take care of me. The other day I turned around and didn't realize that MacK was right behind me and I knocked her down. She didn't get hurt but I still felt so terrible. I can't imagine the pain and guilt that my parents and family felt when they caused sores and blisters simply from touching me.

I can remember having clothing or bandages stick to the sores that I had. Pulling the material off would have caused more sores and blistering, so I would have to soak in the tub until the skin would release the material. I also remember mom using baby oil to get it released without causing too much damage.

To this day there are few doctors that know much if anything about this disease - so you can image how difficult it was for my parents to find compitant doctors to care for me. My mom took me to so many doctors that I became scared of men.

I can't really remember when I first started having problems swallowing, but that problem is what led us to the man that saved my life (or at least the quality of it), Dr. Rivken. He put me on prednisone to help control my outbreaks and dilated my esophagus so that I could swallow better, and eventually replaced my esophagus with a piece of my large intestine.

Needless to say that is a very long story that I will save for next time.

Its Saturday and as soon as my crazy baby girl wakes up from her nap we are going to play in the pool!

I hope you have a wonderful weekend!
Janel