I’m joining the effort to pass on information about a very scary, little known genetic and terminal disease called Gardner’s Syndrome. One very devoted and lovely Ellora’s Cave fan has been devastated by this illness, losing her husband to it and in real danger of losing her children as well. She has asked people read and forward the below information to spread knowledge about this syndrome. Knowledge means money and attention to research and boy is it needed. No matter how horrendous our lives, we as a species need hope. This fan reads erotic romance to escape her reality and remember love, excitement and romance. That in itself is one kind of hope. Let’s give her another by spreading the word. Permission to forward the below is granted.
LIGHT THE NIGHT FOR GS
Gardner’s Syndrome/familial adenomatous polyposis is a chronic, incredibly
painful and terminal disease that approximately 200,000 American men, women and
children endure without hope for a cure, and Americans are not the only ones
affected—it hits every age group, ethnicity, and country on the planet. There is
little to no research being done, little medical knowledge to help the doctors
who deal with it (I was told by a doctor that all he knew of it came from ONE
paragraph from one of his medical textbooks that he more or less memorized to
pass an exam while in med school), and often, by the time the diagnosis is made,
the damage done is far too extensive to hope for much quality of life.
Worse still, the average life span for anyone is 35-40 (meaning age at time of
death, not how long you have after diagnosis); far too frequently, however,
children and teenagers are struck down before they can ever have anything
resembling a life.
There are no celebrities to help publicize the need for help or to educate the
public, nor are there organizations offering support and help to those who
suffer it, or for their families; medical poverty is the norm, along with
guesswork from medical teams and abandonment by families, spouses, and friends.
It’s more than time for a change, it’s time for action. On August 17, 2011, we
are asking that everyone who reads these words join us in lighting the darkness
of ignorance by making luminarias and lining their driveways, walkways, porches
and/or any path that leads to their front door.
Let the world know there is a danger, a nightmare no one knows about, and share
hope with those who have little by lighting their darkness.
I’ll be lighting the first one, and on it will be written my husband’s name and
the date of his death on one side, and on the other, LIGHT THE NIGHT FOR
Please email this to everyone you know; forward it, post it on a blog, print it
up and put it on bulletin boards….but share it. Don’t let one more person die
because the night stayed dark.
Be at peace today everyone. Safe, sane and consensual,