My hopes with this blog are to provide little known diseases and their foundations a little bit more awareness. There will also be funny stories, favorite products, and any other random thought I may want to share with the world.
So, my contribution to the ALS Ice Bucket challenge, and the perfect opening post for a new blog, is educating whoever I can about amyotrophic lateral sclerosis (ALS), and providing links on where to donate.
According to the ALS Association, amyotrophic lateral sclerosis "is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord". This disease slowly takes away the patient's ability to move any part of their body. Currently, there is no cure for ALS, nor is there any type of treatment that can reverse the effects of ALS. A small number of cases are genetic, but the cause of most cases are unknown.
Some quick facts, taken from the ALS Association:
- Amyotrophic lateral sclerosis (ALS), more commonly referred to as Lou Gehrig’s disease, is a progressive neurodegenerative disease that attacks nerve cells and pathways in the brain and spinal cord. When these cells die, voluntary muscle control and movement dies with them. Patients in the later stages of the disease are totally paralyzed, yet in most cases, their minds remain sharp and alert.
- Every day, an average of 15 people are newly diagnosed with ALS — more than 5,600 people per year. As many as 30,000 Americans may currently be affected by ALS. Annually, ALS is responsible for two deaths per 100,000 people.
- The average life expectancy of a person with ALS is two to five years from time of diagnosis. With recent advances in research and improved medical care, many patients are living longer, more productive lives. Half of all those affected live at least three years or more after diagnosis. About 20 percent live five years or more, and up to ten percent will survive more than ten years.
- ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries. ALS can strike anyone. Every single American is threatened by this disease.
The Mayo Clinic states "ALS often begins with muscle twitching and weakness in an arm or leg, or sometimes with slurring of speech. Eventually, ALS can affect your ability to control the muscles needed to move, speak, eat and breathe. ALS can't be cured and eventually leads to death.".
Just think about what it would feel like to not be able to move, but to be completely aware of the fact that you can't move. Many patients even lose the ability to talk. They are held prisoner by their own body, with no relief until they die. It is horrible to think of having to live your life that way, yet thousands of people live this way every day. For many, an ALS diagnosis is a life sentence, and is completely and utterly terrifying.
This is a blog post about how a family affected by ALS views the Ice Bucket challenge: http://www.bostern.com/blog/2014/08/15/what-an-als-family-really-thinks-about-the-ice-bucket-challenge/
The author of this blog is the wife of an ALS patient. There are several posts that provide a glimpse into the life of a family dealing with this horrific disease.
This blog post doesn't do any justice to the patients and families dealing with ALS. But, hopefully through sharing in social media, people will be a little more aware of this disease. I am including links below of places to read more about ALS:
The Mayo Clinic - http://www.mayoclinic.org/diseases-conditions/amyotrophic-lateral-sclerosis/basics/definition/CON-20024397
ALS Association - http://www.alsa.org/about-als/what-is-als.html
WebMD - http://www.webmd.com/brain/understanding-als-basics
And here is a place to donate to help find a cure:
http://www.alsa.org/donate/
Please, share this post. Search online and read some of the heartbreaking stories of how this disease has affected so many. And soon, I will also dump ice water on my head, all in good spirit.
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