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What comes to mind when you think of a deadly disease? Cancer perhaps, or maybe you’re a slightly more metaphorical person and would say teenage attitudes. This is an “underdog disease” that is beginning to creep up around the world, not about the obvious fatality of any given form of cancer. It might not be a disease you’ve even heard about. This seemingly insignificant disease is responsible for 5 out of 100,000 deaths over 20, says the Robert Packard Research Center at John Hopkins Hospital. This disease is called Amyotrophic Lateral Sclerosis (ALS), or Lou Gehrig’s Disease.
Lou Gehrig was a New York Yankees baseball player born in June 1903 to two German immigrants. He was one of four children, but was the only one who survived into adulthood. His endurance and strength in the game earned him the nickname “The Iron Horse” and his 2,130 game streak was a world record until Cal Ripken Jr. broke it in 1995. Doctors at the Mayo Clinic diagnosed him with ALS, a very rare form of degenerative disease at the time, and as one of the more famous to be diagnosed, it was named Lou Gehrig’s disease after him.
About three years ago, my grandmother was diagnosed with ALS. At the time I had no real knowledge of the disease other than what my aunt told me. She said it was named ALS, or Lou Gehrig’s disease, and it would be a hard battle my grandma would face. My grandma Betty fought the disease for a little over three years, and passed away in January of 2007. If you don’t know anyone who is suffering with ALS, consider yourself lucky. I’m not going to say it’s more terrifying to watch take its toll than cancer, but it comes pretty close.
Since I live nearly 839 miles from Illinois where she and my grandfather had lived for many, many years, it was difficult for us to visit nearly as often as my father wanted. When we did go visit in monthly increments, it was clear to see the stages progress. Leading up to last Christmas when I last saw her alive, she slowly lost her ability to walk and use her hands. I’m positive that the incapability to walk was not the worst of it though. Her hands were what she had lived for. She was famous in Springfield for her quilts and nearly everything else that involved a needle, fabric, and thread. Counted cross-stitching, crochet, sewing up clothes we ripped playing in the acre large yard outside; you name it, she did it. It was the most depressing time of my life when she lost her ability to use her hands; I remember going with her to the store and watching her struggle to unlock and open doors, or anything else that required using hands.
ALS is a lethal disease targeting motor neurons. “Amyotrophic” comes from three Greek words combined meaning “no muscle nourishment.” “Lateral” identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As the areas degenerate, it leads to “sclerosis,” or scarring and hardening in the region.
Doctors studying the disease, the Amyotrophic Lateral Sclerosis Association (ALSA), continue to post new information on their page online such as symptoms, statistics, and new information. Symptoms are diverse among patients and the rate at which ALS progresses can be quite variable from one person to another. Early symptoms of ALS include increasing muscle weakness, especially involving the arms and legs, and cause difficulties in speech, swallowing or breathing. Muscle weakness appears in more than half those diagnosed. In later stages, the diagnosed patient has slimmer limbs because of the loss of muscle tissue which can lead to paralysis in more severe cases. Muscles of the eye and bladder are generally not affected and the senses do not deteriorate since they are not run by motor neurons, says the ALSA website.
According to the ALS care database, the disease is quite rarely genetic and occurs throughout the world with no racial, ethnic, or socioeconomic boundaries. It is not contagious and does not vary upon gender, although 60% of the diagnosed are men. It is kindled normally between the ages of 40 and 70, but there are cases of it occurring between the ages of 20 and 30. More than 5,600 people in the U.S. are diagnosed with ALS each year and 30,000 Americans can have the disease at any given. Half of all people affected with ALS live at least three or more years after diagnosis; twenty percent survive five years or more and up to ten percent will live more than ten years. More people die every year from ALS than from Huntington’s Disease or Multiple Sclerosis.
But during all of my grandmother’s pain, there was always happiness and hope. Never once did she stop giving and giving to the community. It’s one thing to hear the news of good Samaritans, but when someone so close and struggling to live is taking time to help at local charities, camps in the country for poor and underprivileged children, and going to church every Sunday so people can see her still smiling face, it’s entirely different.
The cause of ALS is still unknown, but ALSA researchers have new understanding regarding the physiology of the disease. One FDA approved drug called Rilutek can moderately slow the progression of the disease. Stem cells also are being engineered to create overloading sums of helper molecules that can assist the sick motor neurons survive in a rat model, giving hope that new advances will bring success by combining stem cell and other strategies to ALS. The ALSA holds yearly workshops to merge topics in hope that someday soon they will have a better cure than just slowing it down.
Nationwide networks of ALS clinics provide state-of-the-art care services to support those going through the disease. You can find local centers at www.alsa.org as well as links to donation sites. Donations by phone are accepted at (818) 880-9007 and by fax at (818) 880-9006. There is also a toll-free Information and referral service available at (800) 782-4747, or you can mail by the following address: The ALS Association, 27001 Agoura Road, Suite 150, Calabasas Hills, CA 91301.
Getting involved in something like this is not mandatory, but you won’t regret it if you do. I think you can do the math on the numbers of people getting this disease or dying from it. The ALSA is working hard every day to decipher the cryptic nature of this disease and are getting closer to it as you read this. Equally good and bad things come from knowing this. It may make you depressed, but you also receive the satisfaction of knowing yet another thing about the world of medicine and the ability to do something about it. With this knowledge you can improve lives around the world.