~Adopt the EB Butterfly Angel~

Since 1993 scientist have pinpointed the gene that causes Epidermolysis Bullosa, this was a major first step to better diagnostic tests and better understanding of the biological basis of the disorder, and in the long run figuring out how to correct the faulty genes and how to eventually cure it.

There are many, including Nicky and myself, that have a angel watching over us... not only giving us strength to live from day to day with EB in our lives, but most of all, they give us hope that a cure/treatment will be found soon. If you want, please feel free to adopt an EB Butterfly Angel to proudly display on your site to show that you share in the hope that a cure for EB will be found :-)

Do a right click on Angel and choose "save as" or "save target" and then upload to your directory. Please DO NOT link to the image!

* Please be sure to link the EB Butterfly Angel to this page, so that others may adopt it and share in the hope :-) The URL is:
http://www.ebinfoworld.com/adopt.htm

If you do adopt this special Angel, please let me know, I would love to put a link to your site on this page as one of our supporters below under "Sharing in the Hope"!

Thank You!

Sharing in the Hope:

Jen O'Neil Laura Lencia Kathleen Klein Andrea Olinger Marjorie Olinger Linda Rosenbloom     Brenda Gionffrido The Mayhew Family Randy Rushing Paul Edwards Keepers of Truth Tricia Coltharp  

My child has a skin problem called Epidermolysis Bullosa, the Recessive Dystrophic kind.
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. My child always wears bandages to protect the healthy skin and allow healing of wounded skin.
This condition is not contagious. You cannot catch anything. Unfortunately, there is no cure for EB right now, but many doctors are working to find help for EB. If you wish to donate money or to find out more about EB, we would appreciate your contacting the following national organizations which are looking for a cure.
Thank You for your concern.

EBMRF
130 Sandringham Road
Piedmont, CA 94611
Tel (510) 530-9600

I don't know of any disease that children face that causes such long term suffering. You know, you have children that have things that take their lives, but, this disease, they suffer emotionally and physically for a long
long time before they either die or...well, and actually in the severe forms that's what happens.
Lynn Anderson (President of EBMRF)