These pages are lovingly
dedicated to those who passed away too soon. All of them have one thing
in common, they all died of complications from Epidermolysis Bullosa.
EB is the name of a group of disfiguring conditions, caused by defects
in any one of the genes that code for critical skin proteins. A number
of different types of proteins, including collagen and keratin, are woven
together to give skin its remarkably tough, yet flexible, properties.
When any one of these proteins is bad, the weave is no good and the skin
can literally fall apart with the slightest touch, causing painful blistering.
This is a devastating and life-threatening disorder that has no cure as
In Loving Memory
Grief is a solitary
journey. No one but you knows how great the hurt is. No one but you can
know the gaping hole left in your life when someone you know has died.
And no one but you can mourn the silence that was once filled with laughter
and song. It is the nature of love and of death to touch every person
in a totally unique way. Comfort comes from knowing that people have made
the same journey. And solace comes from understanding how others have
learned to sing again.
If your child died
of complications from EB and you would like his or her photo on this page,
please email Silvia THANK YOU!!
You might also consider joining the EBangels mailing list below, to chat
with other parents or anyone that has lost a loved one to Epidermolysis
My child has a
skin problem called Epidermolysis Bullosa.
This is a long fancy name for a condition of the skin where a certain
protein is missing from the top layer of the skin called the epidermis.
Because the skin is missing this protein, blisters develop easily.
This can occur after a slight bump of the skin, or can occur on the
bottom of the feet from walking too much. Many of these blisters are
painful, but most people with EB get used to them over time. My child
will often wear bandages to protect the skin and allow healing underneath.
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.
11812 San Vicente Blvd. Suite 125
Los Angeles, Calif. 90049
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)