Gardner's Syndrome a "Terminal" disease?; all depends upon how you experience or experienced it...

“Light the Night for Gardners Syndrome” is a support group on Facebook created by a woman who had recently lost her husband to Gardner’s Syndrome related cancer.  Although what she writes may not be 100% accurate and may be fueled by a certain form of desperation (highly understandable), especially from her and her husband’s experience with the disease and the medical response (or lack there of), there is something very important in these exchanges.  

She wrote:

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 GARDNER’S SYNDROME.

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.

N said:

Gardners syndrome is not a terminal disease, it is when the polyps turn to cancer and is not detected that it can be terminal. It is a genetic disease that with regular scans can be controlled. So while I'm supporting the awaremess of this disease I don,t like the incorrect information being handed out.

My response:

N, in the U.S., 1% percent of cancer of the colon is FAP/Gardners Syndrome related.  However, the survival rate of those FAP/Gardners detected with colon cancer is 5% while, for all the others, it is above 80%.  Think about it.  My father, a blooming star in Optholmology in 1973, became ill with colon cancer and died of Liver cancer (in Sloan Kettering Cancer Center in New York) less than a year later, leaving my young mother with a 2, 4 and 7-year-old...  My cousin died of a brain tumor at the age of 16.  Before having my rectum removed (18 years after the removal of my colon) I asked my  doctor (#1 in the world in J-Pouch surgeries), although I was experiencing pain and rectal bleeding, "Doctor, but the polyps aren't malignant...  What if we wait on having my rectum removed?"  and his response was, "Yes, we can wait. There is no guarrantee that the polyps will become malignant.  HOWEVER. The second that one of them becomes malignant, IT IS ALL OVER. TOO LATE!"  I had done my research when my younger sister developed thyroid cancer 6 years earlier.  I live with how my superstar father died.  And I couldn't refute his statement.  Think about it.  It's possible that you should do some more research before you make quick statements.  No, I've never had cancer.  However, I live with this horrible situation since I was 4-years-old.  And, yes, if you want to create a list of the worst diseases, you will find many that fall well before Gardners...  But that doesn't remove the reality from what is written here and experienced by so many others...  When I was at Sloan Kettering in 1983, having my first surgery, sharing a room with a beautiful boy who wouldn't live to the age of 15 because of his Leucemia, my mother said, "others have it much worse than you...  I just heard a young woman say to her mother, plead with her, to just let her die, since she was on her 6th surgery."  But, my mother, at the current age of 68 never had a surgery in her life (with the exception of a face lift), although she experienced her American Dream husband die so suddenly and two of her 3 children blah blah blah...  And I hadn't said anything warranting her rude and inconsiderate statement about that poor young woman...  You don't live anyone else's life, nor their health, nor their disease.  You only live your own.  But, one must learn compassion and respect for others, regardless of the limits.  There is always someone better or worse, more talented, less talented, "luckier and unluckier".  I live in Mexico after living my first 33 years in the U.S.  My wife was born into a much worse situation than any of us computer owners and internet surfers from the U.S. and having been born into the country that is now between #10 and #15 of the richest countries in the world.  But, she doesn't have health issues.  And she is mentally healthier than any of the woman I dated in New York City, New Jersey and Massachusetts, although she grew up and lives in a much more racist, classist and sexist country than the one from where I was born and raised.  Now, where do we put her and I on that value line?  Think about it.  Horrible life, wonderful life... Terminal disease, or not as terminal a disease as possibly others...  Familiar Adenamous Polyposis/Gardners Syndrome are umbrella syndromes...  The question is what falls below that umbrella and when and how...  If you are diagnosed with FAP and/or Gardners because of a colonoscopy showing that your large intestine is lined with polyps, GREAT.  But, why would someone shove a sigmoidescope up your ass when you are 13-years-old or 21-years-old if you were not ill and if someone in your family hadn't just died from FAP/Garnders Syndrome related cancer?  They wouldn't.  And the second that those polyps become malignant, it is too late.  And that is the concern.  My uncle was saved by my father's death, as were 2 of my 3 cousins and my younger sister and I.  However, what about those who didn't know that their mother or father died of FAP/Gardner's related cancer?  And that is the question.  And, if you pay attention to those who commented on these pages, you will find that many of them are spouces of recently deceased...  My father was a Doctor for Christ sakes...  He had just saved a girl's eye that was hit with an egg on Mischief Night/All Hallows Eve...  The other surgeons said that there was no solution.  However, her parents took her for a second opinion which was my father.  And less than a year later he was dead.  And I am approaching my 4th surgery and live with the constant concern of "what next?", since Gardners has so many unknowns... When my paternal grandmother died when her sons were young boys, they did not know anything about FAP/Gardners.  Today, they know much more.  But they know so little.  We, the living FAP/Gardners patients, are the test group, the constant and the variable.  And we live with the uncertainty and the what next?  And, not only us, but our spouces live with that question, as do our children and our unborn children...  Today all is sunny and green.  Tomorrow horrible dark clowds or worse...  Suddenly we can't plan for the future.  Suddenly we must just plan for disaster relief or the apocalypse...  And should I subject this to my unborn children.  But, no, my last surgery took care of that and I can't impregnate my wife...  The hand of God, divine intervention or the hand of the devil.  And I wonder, If I die of a Gardners related heart attack ontop of my wife and there is a miracle and I impregnate her...  Is it a good thing or a bad thing?  At least she will have something-- a living connection with me...  It's much better if one suddenly dies, a bullet to the head or my cousin's Gardner related brain tumor or in a car accident before ever having made a committment to another person or other people...  Gardners Syndrome would be a benign terminal disease if it matured 10 to 15 years earlier, before most of us will become parents.  But that's not the case, is it?