Wednesday, April 22, 2009

Nobody Knows.

ALS is a phenomenon that mutated my great grandmother's genetics. She passed the ugly disease onto her children. My mother and two of her first cousins inherited the gene, and were taken by the disease. ALS ravaged my mother's body, stole two years worth of smiles, the ability to eat her favorite peach pancakes and all the weight from her slight body until she was only 45 pounds. She died as peacefully as she could in her husband's arms, but her battle against ALS was anything but peaceful. Eleven years after my mother's death, I am still battling ALS. Most people I talk to don't even know what ALS is. They don't know that there is no cure, no treatment, no cocktail of miracle pills, no therapy, no government funding for research to even FIND any of that. Nobody knows that ALS is an orphan disease. Nobody knows that it costs an average of $250,000 a year to care for a person with ALS (PALS). Nobody knows that military Veterans have a 60% greater chance of developing symptoms of ALS due to exposure to vaccines and other unknown variants. Nobody knows that the government has finally realized their grave error and is now funding Veteran's care. Nobody knows that some family's are forced to suffer loss after loss to ALS because of the mutation in the SOD1 gene and others. Nobody knows that upwards of 500 advocates gather yearly in Washington, DC to raise government awareness of ALS. Nobody knows that the reason we are an orphan disease is for the plain simple fact that ALS does not let us live long enough for our ALS ACCENTS to be heard or counted! Today, I am very excited to hear that my Oregon Governor, Ted Kulongoski, has officially declared May to be ALS AWARENESS DAY. Maybe this will make a difference in the awareness of this 'horrible life stealing without a chance' disease called ALS.


Anonymous said...

Excellant post Snow White! Welcome to the forest.

ALS Grumpy said...

Snow White,

You have arrived the ALS forest with one of the toughest forms of ALS. Familial ALS accounts for about 10% of the total of over 5,000 diagnosed with this orphan disease each year. But it desimmates generations of families much as it has done to yours. And no one knows why? That is really scandalous one you think of it.

I feel lucky, it did not run in my family and I have no living offspring by which to know for sure. In fact, no matter how you come to have this dreadful disease, the course and finality is the same; complete paralysis.

I am happy that you know about the gathering of 500 of us in Washington, D.C., on May 10-12. If past years are any indication, few outside the 500 in attendance will know of the event nor be any smarter in knowing about the disease. What a shame such a momentous event, attended by some who will not be around for the next one, goes unheralded in the media.

What can be done to change this keeping us in a closet? Who should change it and let the light shine in on ALS?