Ride For Life: Gulf War finding may lead to environmental trigger for ALS

Besides ranking as one of nature's cruelest afflictions, Lou Gehrig's disease is also one of the most mysterious. Pesticides, nerve gas, electric shocks, head trauma, even the ingestion of exotic nuts have been investigated as possible causes.

Still, nobody knows the answer.

And so, a preliminary government report this week that veterans of the Persian Gulf war are twice as likely as other soldiers to develop the fatal affliction has more than validated ailing veterans who have been arguing the case for years. It also piqued the interest of scientists, who said the finding might lead to discoveries of what in the environment - both in the war and more generally - triggers a rare disease that renders its victims unable to walk, talk or eventually breathe.

"There are no known environmental triggers," said Dr. Jeffrey Rothstein, a neurologist who studies the disease at the Johns Hopkins School of Medicine. "That's why this study is so interesting."

Dr. Paul Fishman, a neurologist at Baltimore's Veterans' Affairs Medical Center, said scientists have investigated clusters of patients for years without finding a common link. Now, the gulf war study offers the largest and, possibly, the most revealing cluster of patients tied to a single time and place.

"If there's any possibility to tease the answer from a cluster, this is the place to do it," said Fishman, who is also on the neurology faculty at the University of Maryland School of Medicine.

After the war, thousands of veterans claimed they developed a mysterious range of symptoms, collectively known as Gulf War Syndrome, that ranged from fatigue to arthritis and chronic pain. Scientists have yet to document a link between the syndrome and service in the gulf.

Now, with the new study, Lou Gehrig's disease becomes the only affliction that has been tied, at least statistically, to the war. The disease, amyotrophic lateral sclerosis, is marked by the death of nerves in the brain and spinal cord that signal muscles to move.

Though some veterans claim ALS is part of the wider picture of Gulf War Syndrome, many scientists consider it a separate entity because it has a defined set of symptoms.

In the study, which was prompted by afflicted veterans and their families, VA researchers found 40 cases of ALS among 70,000 veterans who were sent to the gulf between 1990 and 1991. This compared with 67 cases among 1.5 million veterans who served during the same time but not in Desert Storm.

Adjusting for age, researchers found that 6.7 out of every million veterans who served in the war could expect a diagnosis of ALS each year. The risk among other veterans was 3.5 per million.

Officials said they would immediately offer disability and survivors benefits to patients and their families. Victims incur tens of thousands of dollars in expenses every year, eventually requiring full-time nursing, occupational therapy, wheelchairs, breathing machines and other devices. Patients live an average of two to five years after the diagnosis.

Researchers with the Department of Veterans Affairs are already interviewing ex-soldiers who are suffering from the disease to see what they had in common.

"We've been asking them about a broad array of potential exposures ranging from insect bites to agents used to protect against nerve gas," said Dr. Ronald Horner, director of epidemiology research at the VA Medical Center in Durham, N.C.

"You can sometimes gain clues about the cause of diseases like this by analyzing the unique exposures they had," said Horner.

Scientists once hoped they would find important clues in Guam, where residents showed an unusually high incidence not only of ALS but also of Parkinson's and Alzheimer's, two other neurological diseases.

Researchers were intrigued by the fact that the West Pacific islanders ate a diet rich in the cycad nut - the fruit of a local palm. And in lab studies, scientists were able to induce an ALS-like disease by injecting chemicals derived from the nut into animals.

But the link was never proved. And since the 1960s, when interest in the Guam connection was high, the disease has been in decline on the island.

Last year, researchers launched a study into a cluster of people who had worked at Kelly Air Force Base in San Antonio. That study will be complicated by the fact that the patients had worked at the base for varying lengths of times - in some cases briefly and long ago, said Fishman.

Denise Donnelly, whose brother Michael developed ALS after serving as an Air Force fighter pilot in the gulf war, said the study will help many ailing veterans.

But she cast doubt on the findings, saying the actual number of afflicted veterans must be much higher. "I believe the number is much higher than 40," she said. "We were able to locate 33 just by our own networking."

Nonetheless, the Boston woman said she was gratified that the VA agreed to conduct the study after her brother and several family members approached agency officials at a conference two years ago.

Michael Donnelly, who wrote a book about his life during and after the war, learned he had ALS in 1996 and is now paralyzed and unable to talk. The South Windsor, Conn., resident has received full benefits since his diagnosis, in part because it was made while he was in the service.