Any with ALS?

[Margaret Diann]

Amyotrophic Lateral Sclerosis (ALS) is a motor neuron disease, first identified in 1869 by the noted French neurologist Jean-Martin Charcot. Although the cause of ALS is not completely understood, the 1990's have brought a wealth of new scientific understanding about the physiology of this disease.
Lou Gehrig, with whom ALS is most commonly associated, first brought national and international attention to the disease back in 1939 when he abruptly retired from baseball after being diagnosed with ALS. To learn more about Lou Gehrig, visit www.lougehrig.com.

However, ALS is not just Lou Gehrig's disease and it knows no boundaries. More

Gulf War Study Q & A
Have there been any environmental conditions identified in this study that trigger ALS?

Thus far, no environmental triggers have been identified in this study. If one or more triggers were identified, this would provide invaluable information about the disease mechanism. It is likely that both genetics and environmental exposure are factors. Consequently there is real interest in initiating other studies to look at gene-environment interactions.

The second phase of this study includes in-depth interviews with veterans to determine environmental exposures by documenting which branch of the military they served in and the specific location where they were stationed. The analysis of the data is continuing; however, the small numbers of people in the study are anticipated to make statistically significant conclusions difficult.

What is the significance of this study to the non-veteran population?

By learning more about the incidence and cause of ALS in subgroups, like people with familial ALS or the military veterans, we will know more about ALS in general that could be applied to others with the disease.

Are studies planned to monitor the occurrence of ALS among veterans of the Iraq War?

The ALS Association is not aware of such an effort; however, the Veterans Affairs Registry is open to all veterans living with ALS. In our patient database, The ALS Association records the military status of people with ALS who contact us. This aggregate data could be useful in raising potential questions about the incidence of ALS following the conclusion of the Iraq War. ALS begins before the symptoms are recognized. This delay can sometimes be years after the disease actually started.

Why do Gulf War veterans, and specifically those in the Army and Air Force have higher rates of ALS?

The higher rates of ALS in these branches of the service are interesting and may be an important finding. At this time, it's not known why theses rates are higher and more research is needed.

If I am a veteran, can I still enroll?

The current study is completed; however, information from all veterans with ALS is being collected in the new VA ALS Registry. For information about joining the registry, contact the Department of Veterans Affairs at (877) 342-5257 or norma003@acpub.duke.edu, or contact The ALS Association at (800) 782-4747 or alsinfo@alsa-national.org.

Since Gulf War veterans diagnosed with ALS are receiving veterans benefits, will the same be true for a Gulf War veteran who did not participate in the study, i.e., now that the study is closed, will veterans diagnosed subsequently be entitled to receive benefits?

Yes, Gulf War veterans with ALS who were deployed to the Gulf region are now entitled to receive benefits from the Department of Veterans Affairs (VA). This eligibility is not connected to participation in the study. Contact the VA for more information.

Given the concerns raised in the editorial regarding the small number of cases involved in this study, what is the significance of this report?

It was important to conduct this study to address the questions from veterans with ALS, The ALS Association and the Department of Veterans Affairs about the possible increased risk of ALS from service in the Gulf War region. While we hope that single studies will provide irrefutable answers to complex questions, this rarely happens in science.


The Department of Veterans Affairs web site and toll free telephone number are:
www.va.gov
(877) 342-5257

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