Throughout history medical professionals have faced what were initially perceived as unanswerable questions, in identifying, controlling and treating incurable diseases.
Be it the Bubonic Plague, Polio, HIV/AIDS, Ebola or TB, health professionals have faced severe emergencies. In most of these instances doctors and scientists have shown success in either developing treatments or preventing future outbreaks.
Incurable diseases have the ability to incite fear and mass panic when they afflict people on a large scale. However when the distress is minor and extremely rare it takes a long time to promote awareness and raise funds necessary to conduct research.
ALS (amyotrophic lateral sclerosis) is one of these very diseases. It is an incurable motor neuron disease that afflicts the nervous system. It is incredibly rare, making it all the more difficult to combat.
When diagnosed the nerve cells in the brain have already begun to deteriorate. This slowly paralyzes the patient by inhibiting the spinal cord. As the disease advances the brain begins to lose control over voluntary muscle movement.
Throughout, the patient does not lose their cognitive functions and remains fully aware of all that is going on around them. They are cognizant that over time the limitations of their body will entrap them.
The disease continues to spread. It takes away the ability to walk and stand, the ability to lift and flex your fingers; it even attacks the vocal cords, leaving the patient unable to formulate the words still taking shape in their head.
Everyone else meanwhile is grasping for answers, but ultimately this attempt just leaves you speechless.
The disease is relentless, and for most only stops spreading when it hits the lungs, leading to respiratory failure.
No one knows what causes ALS. Some scientists have found that ALS patients have experienced severe head trauma at one point in their lives, but there is still not enough conclusive research to assert this claim.[1]
This disease was once foreign but because of the viral success of the Ice Bucket challenge ALS has become well known outside of its nickname Lou Gehrig’s disease. Throughout the summer the campaign has been a huge success by bringing national attention and a massive amount of funding (currently $88 million) to the ALS association.[2]
As the campaign began to spread it began to receive a backlash about the manner in which it was being conducted.
Some participants were donating to other charities, some just wanting to participate in the fun viral bandwagon, (gaining no understanding as to what ALS is) while others didn’t feel the need to donate.
Individuals aware of what ALS looks like in a person cannot help but be conflicted by the ice bucket challenge. It is incredible how successful the campaign has been in both raising awareness and funding. Yet it can be difficult to watch people having fun by laughing and pouring water over their head, talking about a disease that currently has no cure.
Whether you like the advocacy or not, the ice bucket challenge has been a success. It isn’t perfect but it has done something incredibly difficult in a short period of time. It has spread national awareness and allowed the ALS association to raise funds in a manner that will dramatically increase the organization’s capacity.
Those who have lost someone to the disease may be upset by the challenge because it reminds them how little could be done to save the person they cared about. Regardless the disease is still present and while one person’s hope may have evaporated there are others desperate to find a way to keep that hope from slipping away.
The challenge is not for everyone but it has been embraced by the masses and that is something that ALS needs.
http://www.alsa.org/donate/
[1] http://indianexpress.com/article/world/world-others/what-is-als-and-why-is-the-ice-bucket-challenge-making-headlines-on-social-media/
[2] http://bostinno.streetwise.co/2014/08/26/als-ice-bucket-challenge-donation-total-update-amount-of-money-raised-is-increasing-matt-damon-uses-toilet-water-video