ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Saturday, December 3, 2011

Are We Literally Protecting People With ALS To Death?

Here is an important perspective from a man with ALS. It was posted on the ALS TDI forum where patients with scientific backgrounds are collaborating and experimenting and sharing data.
I have a slightly different perspective than most coming from the radiation oncology field. The things we put our patients through would seem downright medieval to most. We expose people to enormous amounts of radiation that often makes them so sick they almost die form it. We have perfected the dose to bring them to the edge of death but not beyond. We all know what chemotherapy patients go through. They lose all the cells in their stomach and can barely eat for weeks. Again, we bring these people to the brink of death because that is what it takes to kill the cancer cells.

People with ALS are in no less dire straits than people with cancer. Getting sick from a potentially life saving cure should not deter us from trying. No doubt there is a risk with this sort of thing, perhaps even death, so only those willing to risk it all should attempt it, but we risk it all by doing nothing.

4 comments:

  1. Less than 2 weeks ago a group of us created an on line petition that started with 1 person and now has grown to almost 1000 signatures. We hope everyone will read the petition, and the updates on the petition page. We need a few more willing folks to join our steering committee. Please tell Diane...(email on petition page), or edjohnson@alumni.duke.edu if you want to know more.
    http://www.change.org/petitions/corporate-citizens-authorize-and-make-available-compassionate-use-drugs-for-als-patients-now

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  2. At least with cancer, typically, you have some kind of treatment available, some kind of course of treatment, some kind of hope that "maybe I will beat this thing."

    ALS doesn't even come close to having a treatment available or a course of treatment. There is hope, because that's all PALS and CALS can have. Living the ALS life without the hope of a treatment....well, most people wouldn't last a week. Good thing ALS peoples are some of the strongest and smartest people in the world.

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  3. These PALS are to be commended for taking this initiative and maybe, sacrificing their health-
    Oh-Wait a minute--What do they have to loose?? Their life?? That's just what they're fighting for.
    To have options to try instead of no options.
    To have funding like the AIDS and Breast Cancer Movements, that's what they're fighting for.
    If you feel like helping in this fight to life, go to the site below.
    Why? It might just be the right thing to do.

    http://www.change.org/petitions/corporate-citizens-authorize-and-make-available-compassionate-use-drugs-for-als-patients-now

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  4. That's what I say...at least with cancer in the early stages, there is some kind of treatment available, drug, chemo, radiation.."something" to give some raY of hope that maybe it will beat the monster within.

    However, with ALS it doesn't even come close to having a treatment available, much less a cure to dodge the coming bullet - death sentence!

    Most most people wouldn't stand knowing they will be fully paralysed in 2-3 years!!!
    That's why I also believe that ALS people are some of the strongest, not to mention smartest people in the world. DON'T EVER GIVE UP!!!
    Pray the day will come when this horrific disease can be prevented and stopped at all cause with the help of God almighty.
    LET'S SIGN THE PETITION AND HELP BEAT ALS!!!

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