Hi y'all, for today's post I'd like to share something a bit more serious than usual.
Ellora's Cave has one fan who really knows what she's talking about when she says the books are a much-needed escape from reality, because her reality is pretty darn bad on the medical front. Her family has been devastated by a truly horrible genetic disease that's already taken her husband and seems determined to claim her children as well. Because so few people know of Gardner's Syndrome, she asked that people read and forward the information below to help spread the word in the hope of raising people's awareness and possibly generating more interest among potential researchers. I am not an email forwarder by habit, but this is one very tough, very nice and very tired lady who deserves some help fighting her fight. Please read and consider forwarding/posting elsewhere, even if you normally don't. There's also a link to a Facebook page you can "like" to help out.
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.