ALS update: Every day, 15 Americans – more than 5,600 per year – receive the grim news from their doctors that they have Lou Gehrig’s Disease. Officially known as Amyotrophic Lateral Sclerosis (ALS), the doctor’s diagnosis is accompanied by a devastating explanation.

ALS is an incurable and fatal disorder of the motor neurons, the highly specialized cells in the brain and spinal cord responsible for all voluntary muscle movement. Patients can expect to live two to five years after the doctor’s diagnosis. ALS occurs throughout the world without regard to racial, ethnic, or socioeconomic status. Every single American is threatened, but studies show United States Veterans develop ALS twice as often as Americans with no military service – and no one knows why. The statistical evidence is so solid that in 2008 the Department of Veterans Affairs (VA) designated ALS a “presumptively compensable illness.”

If you’re a Veteran and your doctor says you have ALS, the VA presumes your military service caused it. Most newly-diagnosed ALS patients are between 55 and 75 years of age, but some are younger than 40. Reports suggest 20,000 – 30,000 Americans have ALS, but because no records have been kept throughout the country, it is hard to know for sure.

Annually, ALS is responsible for two deaths per 100,000 Americans. In the United States, ALS occurs as often as multiple sclerosis (MS), but ALS is less prevalent because of its high mortality. In 2008, the journal, Neuroepidemiology, reported the incidence of ALS in non-Hispanic Caucasians was twice as high as African, Asian and Hispanic ethnicities. With recent advances in research and improved medical care, many patients are living longer; 20 percent may live five years or more, and up to ten percent will survive more than ten years. Younger patients appear to have a better chance at these longer spans. Ten percent of ALS cases are familial; these patients usually do not fare as well as non-related patients, however, and typically live only one to two years after symptoms appear.

With ALS the nerve cells of a person with ALS (called PALS) degenerate until they prevent communications between the brain and muscles, ultimately leading to paralysis. PALS in later stages are totally paralyzed, but their minds remain sharp and alert. ALS affects nerve cells in the muscles of both the upper and lower body. For some PALS, ALS first affects their hands or arms; for others it starts in their feet or legs; and for some it’s their speech. But it ends the same way for all. Studies have not found definite environmental causes and no confirmed link has been found with infections, diet, physical activity, and injury. It is unknown whether geographical clusters of ALS cases exist. In 2008, Congress passed the ALS Registry Act, which directs the Centers for Disease Control and the Agency for Toxic Substances and Disease Registry (ATSDR), a federal public health agency, to develop a registry to gather and organize information about people living with ALS. The goal of the ALS Registry is to help scientists learn more about ALS and what factors affect the disease by gathering information from those living with it. The information may also be used to improve how the disease is managed and how standards of care are developed.

More information about the Registry is available at wwwn.cdc.gov/als/ or by calling 800-232-4636.

There are a number of organizations helping to find a cure. The ALS Association (ALSA), established in 1985, is the best known national non-profit organization fighting Lou Gehrig’s Disease. ALSA funds global research, assists people with ALS through a nationwide network of chapters, coordinates multidisciplinary care through certified clinical care centers, and advocates for increased public and private support of ALS research and public policy initiatives. More information on ALSA can be found at www.alsa.org/, calling (800) 782-4747, or emailing alsinfo@alsa-national.org. There are a number of ways to help veterans with ALS. You can volunteer at the closest VA medical facility or join the ALS Association’s national fundraising event, Walk to Defeat ALS. This is held in cities across the Nation. More than 100,000 people with ALS, their friends, families and corporations have raised over $100 million since the Walk began in 2000. Call 888-Walk-ALS or email csavino@alsa-national.org for more information. [Source: ArmyEchoes | Lt. Col. (Ret) Mark Overberg | Jan-Apr 2013]