There's increased incidence of ALS — also known as Lou Gehrig's Disease — among veterans of all wars, from the Vietnam War to the Gulf War to Operations Enduring Freedom and Iraqi Freedom.
This week, Marine Corps veteran Roger Brannon reached the two-year anniversary of a life-altering amyotrophic lateral sclerosis diagnosis, a milestone that many in his position will not live to see. ALS is an incurable, neurodegenerative disease that progresses rapidly.
Over 80 percent of those diagnosed die within two to five years. Military veterans are two times more likely to develop ALS than those who've never served. It was once thought that increased incidence of ALS was limited to veterans of Vietnam and the first Gulf War, but it's now striking Enduring Freedom vets who served in Afghanistan at the same rates. Despite this, there's a surprisingly low amount of awareness of the disease among the veteran community.
Roger Brannon and his wife Pam are on a mission to change this. Up to to 95 percent of veterans who develop the disease are diagnosed with sporadic ALS — which means there is no family history of the disease and doctors unable to precisely pinpoint a cause.
"They can't tell us why we have it, what we did to get it, and that's very unnerving because you can't tell any other veteran or friend what to do to not get ALS," Roger says.
What Roger and Pam are doing is sharing what they know: resources, coping strategies, and VA benefits. Veterans actually have far greater available to them than the average ALS patient in America. For example, Radicava, the first drug treatment specifically for ALS approved since 1995, was made available to VA hospitals before more widespread distribution – and the Department of Veterans Affairs has automatically assumed, since 2008, that a veteran's ALS is service-connected.
ALS is a terminal disease but early diagnosis can slow its progression and knowing about it increases the likelihood of identifying it quickly. All veterans and their families can do is arm themselves with the best information on how to deal with what lies ahead. With a pre-teen and teen at home, the hardest thing for Pam Brannon is not knowing if they will ever live out the family's dreams.
"Will there be a next birthday? A next anniversary? Will Roger live to see a graduation?" Pam asks. "At the end of the day, there's no book for when you're diagnosed with a terminal disease."